Inherited Metabolic Disorders Archives

June Guest Post: Nutricia Metabolics

Posted on June 23, 2021 by Maggie Allan

We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders along with tasty recipes. This post is intended for those following a low protein diet.

Nutricia have launched our new website for patients with Inherited Metabolic Diseases. Check it out here!

There is lots to explore…

Try the latest recipes from Chef Derek.
Check out our educational resources and articles.
Stay up to date with news and events from Nutricia.
Find information about Nutricia products.*
Learn about Nutricia’s Homeward service.
Join the low protein newsletter to stay up to date.
Sign up to the Anamix 6 club.

We hope you find it useful and find what you need.

Best regards,

Lucy at Nutricia Metabolics

Hear the latest news and recipes first via Nutricia Metabolics social media!

Facebook: Low Protein Connect
Instagram: @lowproconnect
Twitter: @lowproconnect
YouTube: LowProteinConnect

Is there a topic that you would like to read about? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

*All Nutricia products listed on this website are Foods for Special Medical Purposes and should be used under medical supervision.

Sue’s Fundraising Blog: One Year Alcohol Free

Posted on February 25, 2021 by Maggie Allan

Last year, Sue decided to take on a fundraising challenge for Metabolic Support UK. Sue’s husband, Carl, lives with Pyruvate Kinase Deficiency (PKD), which affects how his red blood cells are broken down and means that he has to have blood transfusions every two weeks. For her challenge, Sue decided to give up alcohol for a whole year! In her latest blog, she’s sharing how she’s finding the challenge and why she decided to go alcohol free for one year.

“Well, hello again! I am sat looking out at the first patch of sunshine we have had for a while, accompanied by some positively balmy weather. I have actually opened windows; would you believe it? Even Charlie dog has agreed to go outside without a gentle nudge, with no baleful look back over his shoulder at me.

So, spring might finally have sprung!

Student-ing is going well (I think). Many (so many) assignments went in a couple of weeks ago, and I am sat awaiting results and trying not to think about it. Fortunately(?), we are straight into the next teaching block, so no time to dwell on what might be.

So – to alcohol – or the lack of it.

I’m not going to lie, there have been some evenings when I would have loved a glass of wine. One such occasion was on the day of my final submission when I tried to convert a script from a specialist programme to a PDF to send to my tutor, and it vanished from the screen. Totally gone. I had two hours to type the entire thing again, heart pounding, to get it in on time. Thank the Lord I had printed off a hard copy first.

Our daughter, Molly, then came home from school, pressed a few buttons, and hey presto, there it was! Whilst I was very grateful, this would have been much more helpful three hours earlier. I swallowed that thought down – to be fair, not her fault – and thanked her. But arrgh!!

Since May last year, I have been deprived of alcohol to help raise funds for this wonderful charity, Metabolic Support UK (MSUK).

Why am I doing this?

MSUK have been amazing in supporting people with a wide variety of metabolic diseases. In particular, my husband, Carl, who has Pyruvate Kinase Deficiency. Especially during lockdown, Carl found that being able to talk to somebody outside the family who understood how he felt really helped him.

There is also a light-hearted Zoom chat called Coffee Beans where people with an Inherited Metabolic Disorder, and/or their families, get together. I’ve heard many a belly laugh from Carl as I have ambled past.

So far, we have raised £335 online with your lovely help, and I have just been given another £100 in cash, making the total so far £435. This is amazing, but I am hoping that we could manage a little more before this challenge finishes in May. If you can help some more, here is the link to follow: https://uk.virginmoneygiving.com/SusanLander.

Thank you everyone for your support so far; onwards and upwards!”

Thank you so much to Sue for your amazing support and if you would like to take on a fundraising challenge for Metabolic Support UK and would like some advice on how to get started, please email Maggie on margaret@metabolicsupportuk.org

January Guest Post: Nutricia Metabolics

Posted on January 29, 2021 by Maggie Allan

Happy New Year from Nutricia!

Are you looking to start the year with a healthy habit or do you need some inspiration on healthy meals and snacks? Throughout the whole of January, Chef Derek will be focusing on healthy low protein meals packed with fibre.

Check out our low protein recipes and videos on our website:

Best regards,

Lucy at Nutricia Metabolics

Hear the latest news and recipes first via Nutricia Metabolics social media!

Facebook: Low Protein Connect
Instagram: @lowproconnect
Twitter: @lowproconnect
YouTube: LowProteinConnect

Is there a topic that you would like to read about? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

Sue’s Fundraising Blog: The Joy of Hot Chocolate!

Posted on November 19, 2020 by Maggie Allan

A few months ago, Sue decided to take on a fundraising challenge for Metabolic Support UK. Sue’s husband, Carl, lives with Pyruvate Kinase Deficiency (PKD), which affects how his red blood cells are broken down and means that he has to have blood transfusions every two weeks. For her challenge, Sue decided to give up alcohol for a whole year! In her latest blog, she’s sharing her newly rekindled love for hot chocolate!

“Well, hi again, guys.

Apologies that it has been a little while since I have checked in. There has been a good reason, I promise you. Drumroll please…….

At the grand old age of 50, I have become a student!

I have begun a degree in Creative & Professional Writing, hoping someday to make a living from it. What has, however, become abundantly clear is the complete lack of knowledge I have in the subject matter.

It is not good enough that I have read nearly everything and anything for much of my life. Oh no, there is so much more to it than that. For example, over the weekend, my given task was to create a blog. From scratch. I now have (many many hours later) a very healthy respect for people who do this on a daily basis and keep it uploaded with fresh content. This week, I am being asked to engage in scriptwriting. Hmmm.

Anyway, to alcohol!

Well, the lack of it anyway. I find that this, actually, is finally getting a little easier. Not in terms of “needing” a drink; I don’t think that “need” ever came into it. More in terms of just not thinking about having a glass of wine, maybe as much as I used to. I am becoming so used to a cup of tea of an evening, or with a steaming mug of hot chocolate with the colder weather setting in, that I don’t think so much about opening that cheeky little bottle. There you go. I might finally be adulting.

I have included a picture of my new, adored, Moomin mug full of the aforementioned hot chocolate. Because, let’s face it, who doesn’t want to look at a Moomin mug?

However, that is not to say that there are not times when I would have loved a drink. I am thinking particularly of one uniquely stressful lecture where I had to write a story about an altercation in a post office, then rewrite it in the style of metaphor, then finally in the language of smells. I was given around half an hour total. Let us just say that by the end of it, a large glass of red would not have gone amiss.

So finally, not to nag, but if anyone would like to add in a few more pennies to help the wonderful work of MSUK, that would be fantastic. You can donate here. I promise that I am suffering for the cause if that helps!”

If you would like to take on a fundraising challenge for Metabolic Support UK and would like some advice on how to get started, please email Maggie on margaret@metabolicsupportuk.org

Sue’s Fundraising Blog: Discovering Mocktails!

Posted on September 10, 2020 by Maggie Allan

Two months ago, Sue decided to take on a fundraising challenge for Metabolic Support UK. Sue’s husband, Carl, lives with Pyruvate Kinase Deficiency (PKD), which affects how his red blood cells are broken down and means that he has to have blood transfusions every two weeks. For her challenge, Sue decided to give up alcohol for a whole year! Two months on, Sue’s been experimenting with mocktails!

“Hi again! Well, everyone, this month, I have been exploring mocktails. I know…its’s tough….but someone had to do it! With the summer holidays now nearly over, but the weather continuing to be warm, it was time to be a little more adventurous with the soft drinks.

We were brave this month and took a few days away in sunny Plymouth. Charlie (the dog) went off to be looked after (spoilt and adored) by a close friend. The few days away were a profound relief after spending so much time “Chez Lander”. The weather was lovely, mostly. I’m ignoring the monsoon that erupted one evening, as we were safely under cover. We watched it with awe and were very grateful that we were not in a tent (unlike my poor sister and her family).

So, back to the mocktails! In the past, I have been very partial to a pina colada and a rum punch, so this seemed like a good place to start. Following a little experimentation, here are some of the results:

The holiday was lovely. Not least because, for once, we didn’t have to take a child to A&E! They have been particularly skilled in ensuring that this has happened on most of our past holidays. We have an impressive list of broken body parts and limbs trapped in play equipment/railings, etc. For once, it was just a relaxed break, great food and the odd harbour trip and crazy golf round thrown in.

Thank you all for your continuing support for Metabolic Support UK – you continue to be amazing. You can still give a donation to the charity, if you wish, via my Virgin Giving page here, to further help the great work that they do. Donations are really important at this time due to the impact of COVID-19.

Here is one of the recipes that we were obliged to enjoy 😉:

Thank you to Sue for sharing your mocktail discoveries – they look delicious!

If you would like to take on a fundraising challenge for Metabolic Support UK and would like some advice on how to get started, please email Maggie on margaret@metabolicsupportuk.org

Sue’s Fundraising Challenge

Posted on July 30, 2020July 31, 2020 by Maggie Allan

A month ago, Sue decided to take on a fundraising challenge for Metabolic Support UK. Sue’s husband, Carl, lives with Pyruvate Kinase Deficiency (PKD), which affects how his red blood cells are broken down and means that he has to have blood transfusions every two weeks. For her challenge, Sue decided to give up alcohol for a whole year! One month on, we’ve been catching up with Sue to see how she’s finding the sober life!

“WOW!

Well. I’ve made it through the first month without a glass of chilled rose (or other less good drinks) and have survived. There have been moments, I won’t deny it, when I would have happily reached for a glass of wine. For example, picture this:

Went outside to get the dog’s supper, followed by dog. Brought it inside. No dog. This never happens. It was mealtime after all and our dog is obsessed with food. I swear he would walk over my cold, dead body to reach the food bowl. Where was he? Went back outside; the food bin had been knocked over by some helpful creature, generously spreading part-rotted potato skins, watermelon and tea bags, etc everywhere. Where was our dog? Pigging out happily in the middle of it all.

Extracting him, inserting him back into the house and closing the back door firmly on him, I cleared up the stinking mess. Grim. Finished hosing it all down and went back into the house to find that the dog had performed a dirty protest at my unfair treatment of him. There was a poo waiting for me on the mat (he had clearly needed to go and I had shut him inside the house). Great. At this point, a glass of wine would have been very welcome.

In other more pleasant news, Carl is hoping to go back to two weekly blood transfusions, feeling it is now safe to do so. However, this does depend on when the hospital can fit him in. Consequently, he is looking forward to feeling less exhausted through a low HB. We are even considering going to sit outside a cafe with a cup of tea. I know, it’s amazing how such a simple action seems fraught with danger. Who needs bungee jumping for thrills?!

Thank you so much to everyone who has contributed so far, supporting Metabolic Support UK in all the fabulous work that they do. We have reached £315 so far towards the £1000 goal! To those who have helped, you are all fabulous people and I love you.

I’ll be back with further news from the Lander household regularly but hopefully with no more dog incidents. Please continue to spread the word about my fundraising challenge and to keep me on the straight and narrow. I raise a glass to you all (of orange juice, of course).”

Thank you so much to Sue for keeping on with the challenge, especially with the challenges of lockdown – we really appreciate your support! If you would like to donate to Sue’s page to help keep the motivation up, please see here.

If you would like to start a fundraiser but don’t know where to start, please contact Maggie on margaret@metabolicsupportuk.org

May Guest Post: Nutricia Metabolics

Posted on May 28, 2020 by Maggie Allan

Are you looking to expand your baking and cooking repertoire? Experimenting with new recipes can be good fun and who doesn’t enjoy some variety at mealtimes. But do you find yourself asking why didn’t my bread rise? Or why does my pasta stick together?

You are not alone! Chef Derek has been busy filming videos with hints and tips on cooking for a low protein diet and answers all these common questions as well as tips on storage and recipes.

Look out for a new video every Friday via our social media pages:
• Facebook: Low Protein Connect
• Instagram: @lowproconnect
• Twitter: @lowproconnect
• YouTube: LowProteinConnect

Or click here to sign up to our mailing list to receive them directly.
There is also a huge range of recipes via www.lowproteinconnect.com

Don’t forget to share your low protein creations with us on social media and if you’d like to receive a copy of any of our low protein recipe books, please speak to your dietitian who can help organise this.

Best regards,

Lucy at Nutricia Metabolics

Is there a topic that you would like to read about? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

Top Tips: Homeschooling

Posted on April 17, 2020April 17, 2020 by Maggie Allan

During this challenging time, parents are having to adapt to becoming teachers to their children as well as parents and carers. You may be finding it difficult to balance so many hats but we’re here to support you with some tips on how to take on this new role as a teacher.

Establish routine – Whilst schools may be closed, it’s important to maintain routines with children. If your child is struggling to differentiate between play time and the need to do school work, routines will help them adjust. Wake your child up at the usual time that they would get up for school, follow the usual “getting ready for school” practices and you may even want to get them to put on their uniform, so that they’re aware that today is a school day.
Prepare – Plan activities and lessons the day before. Have the workspace set up and ready, so that your child can settle down to their first activity. Creating a timetable is a really good way to help you plan ahead. You can download a timetable template here: Timetable
Remove distractions – If possible, set up the workspace in a room or area with minimal distractions. Being away from toys and the TV will often help a child focus on the activity in front of them.
Check materials are appropriate for their learning level– If you’re using materials that you’ve found online, check that they’re appropriate for the age and learning level of your child.
Make it interesting – The more interactive and fun that you can make lessons, the more engaged your child will be. Get creative and find ways to teach. There are lots of useful resources out there – take a look at our recommended resources guide at the bottom of this blog for further inspiration.
Become the student – Allowing children to take charge of their learning and to teach you is a great way for kids to learn. Review curriculum resources and ask your child to take them away and make some notes to teach you about the subject. This will keep your child engaged in learning and give them a sense of accomplishment.
Feedback – Give your child feedback. Mark their work and review it with them. Children respond well to praise and constructive feedback about their work. Remember that it is important to keep all feedback positive and constructive as negative feedback can make children feel like they have failed and they lose interest in the subject matter.
Relax! – It’s important to remember that you’re doing your best and that is enough. It’s natural to feel overwhelmed and anxious by the idea of home schooling and like you don’t know what to do or how to do it. It’s okay to throw plans out of the window if they’re just not working and it’s okay to skip a day or two. It’s also okay to wing it – we all are during this challenging time. There are thousands of parents throughout the world in the same boat as you. The very best that you can do is to be there for your child/children and give them your time, love and attention. You will get through this and there are plenty of resources out there to support you.

Home Schooling Recommended Resources List:

If you need any further support with homeschooling or anything else, please don’t hesitate to contact us on contact@metabolicsupportuk.org or 0845 241 2173.

Coping Strategies: Apps for Meditation

Posted on April 9, 2020 by Maggie Allan

In these unprecedented times, it’s so important to take care of our mental health as much as our physical health. This week, our team are sharing some of their favourite apps that they use to practise awareness.

Maggie: My favourite meditation app is called Simple Habit. It has lots of guided meditations and a section where you can pick your mood or the time of day and the app will suggest a meditation according to your mood and your current time of day.

Spotify also has some great playlists for meditation, including some guided meditation playlists and soothing sounds to which you can do a self-guided mediation.

Helen: I am a huge fan of Headspace. You can pay for the subscription but there’s a lot of free things on there too. I find that it really helps me to relieve stress and focus my mind during times of anxiety. It’s very clear and easy to use and it just helps ground me when I’m a bit all over the place!

I also like Wysa – it’s a self-help/relaxation/virtual therapist app. Sometimes I just need to throw my thoughts down and get them out of my head. I could just do this on paper but the Wysa app reviews these thoughts and gives me helpful tips and videos, which I find to be a great help. If I’m having a really bad day, the app helps me to identify a positive response to my worries or problems.

Jess: I have previously used the CALM app. There are soothing sounds and audio books within the app and it allows you to switch off and take some time out from the world for 30 minutes or so.

We hope these apps may be helpful to you and if you have any apps that you use that you enjoy, please let us know on contact@metabolicsupportuk.org, so that we can suggest these to our community.

Self-Care Tips: Inspiring Books and Films

Posted on April 3, 2020 by Maggie Allan

In these unprecedented times, it’s important to take care of our mental health as much as our physical health. One way to nurture our mental health is to find ways to unwind, such as watching films or reading books. Some of our team have shared what some of their favourite feel-good books and films are, which we hope that you might enjoy as well!

Rachel: I think Matilda is a great film because it has a smart girl who is under-estimated and she shows that she is extraordinary in many ways. Plus, it has a happy ending. It’s one of our all-time family favourites and a must-watch!

Notting Hill is a story of a shy and floppy-haired bookshop owner (Hugh Grant), who falls in love with a Hollywood A-lister, played by Julia Roberts. His heart gets broken and so does hers. Then they get unbroken. It’s so funny and I can watch it over and over again….and I do!

Julie: I asked my mum, who is nearly 80 and self-isolating, if there’s a film that she has watched recently that she found uplifting and she said Holiday in the Wild on Netflix. She said that she loved the way that the humans cared for the elephants and that everyone came together at a time of need. She also loved the fact that we watched it together as a family at Christmas and that she is looking forward to watching it again next Christmas, with her family all around her.

I also love Bryony Gordon’s Eat, Drink and Run. At one point, there was a lot of things going on in my life, nothing major but lots of little things, and a friend gave me Bryony Gordon’s Eat, Drink and Run and it had a lovely positive impact on my life. It is an honest, hilarious and inspiring story of how Bryony who suffers from depression and anxiety trains to run the London Marathon. She has never run before, not even for a bus! I laughed out loud, cried and cheered. And for a very short period (and I mean a short period!), I even thought about running a marathon myself! The book has been passed around the Metabolic Support UK team’s office and we have all learnt different things about ourselves from reading it. I would recommend it and you never know, it might inspire you to run the 2021 London Marathon for Metabolic Support UK!

Maggie: One of my favourite films is A Little Princess about a young girl who goes to boarding school when her father is enlisted to fight in World War I. Although it involves lots of tears (particularly from me!), it has the best ending and is a tale of how you can find positivity in tricky times.

I’m a big reader and it’s difficult for me to pick one book but one of the books that I particularly enjoyed was The hundred-year-old man who climbed out of the window and disappeared by Jonas Jonasson. This book tells the tale of a hundred-year-old man who gets up to lots of trouble after he decides to climb out of his window at his care home on his hundredth birthday! If you want a good giggle and something light-hearted to read, I’d definitely recommend this book.

Sally: I’m trying to remind myself that this is an opportunity to re-visit some of my favourite things, which is not a chance that we’d often get when things are “normal”. I’m getting Disney+, making a list of books that I love that I can read in the next couple of weeks, and I’ve also started a favourite TV show from the beginning. It sounds simple but it’s one that I’ve watched for years, so there’s something really familiar and comforting about watching it now.

Please let us know which books you find inspiring and we hope that you enjoy the books and films that we’ve suggested!

March Guest Post: Nutricia Metabolics

Posted on March 27, 2020 by Maggie Allan

Baking is a great way to relax and get creative at home. Why not try one of our low protein cupcake or biscotti recipes! Great to make with the kids or just for your own enjoyment. Remember to share!

Best regards,

Lucy at Nutricia Metabolics

Recipes of the Month:

Carrot Cupcakes

Please click on the photo to see the recipe!

Cherry Coconut Biscotti

Please click on the photo to see the recipe!

You can keep up to date with Nutricia Metabolics on social media too!

Facebook: Low Protein Connect
Instagram: @lowproconnect
Twitter: @lowproconnect
YouTube: LowProteinConnect

Is there a topic that you would like to read about? Or maybe you have an idea for our Recipe of the Month? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

A – Z of Fundraising Ideas: I

Posted on March 13, 2020 by Maggie Allan

Continuing our blog series of fundraising ideas, today is brought to you by the letter I!

Whether you’re a first time or regular fundraiser, we all need a little inspiration sometimes. So, to give you a helping hand, we’re putting all of our favourite fundraising ideas together in a handy series of blog posts!

Ice Cream Making Day – If you’re one of the lucky ones who owns an ice cream making machine, consider hosting an event involving this beautiful food. Host an ice cream making class or make a few different flavours and hold an ice cream tasting party! After all, who wouldn’t want to eat ice cream for charity?

Instagram – Have you got an Instagram account? Consider uploading a photo of a charity event that you’ve attended or of some charity merchandise that you have, to promote awareness of a cause that you support. Add the donation details of your charity to your photo to make it easier for your followers to send a few pennies along to your chosen charity.

Internet No More! – Challenge yourself to go without the internet and get sponsored to do this! Internet banking, you now need to go into the bank to do this; and no more social media and Netflix. The challenge may be greater than you think!

International Evening – Host an event with international food and entertainment. Either get people to bring their own international foods and make it a market type event, giving everyone the option to purchase different foods, or host a dinner party with an international menu and entertainment to follow.

Irish Night – Have an evening to toast to the luck of the Irish with Irish tipple and food on the menu. Have Irish music to accompany all the good food to further attract your guests to your do!

Intergalactic Evening – Do you love space and astrology? Why not host an event to celebrate your passion and inspire this in others? You could have a night watching astrology documentaries or space-based films, hold a star-gazing evening and teach others about the different constellations in the sky, or host a dinner party with space inspired foods!

Ice Themed Party – Maybe a bit of a chilly event but one that could amaze your guests! Kit out your house or venue with glittery fake snow, little polar bears and penguins, and you could even offer your guests Narnia coats when they arrive! Have an evening with snow inspired foods and iced drinks for people dressed in winter themed outfits. Which of your friends can produce the best snow queen outfit too?

Ice Skating Party – Either see if you can encourage an ice skating rink to host an ice skating party in support of your charity, or provide an ice skating excursion with refreshments for a set price. Whichever option you choose, get your skates at the ready and start generating some interest in your event!

Some of these activities are great as stand-alone events, and some can be run together to support a bigger event.

We hope this post has given you some food for thought! All of your fundraising is very much appreciated and helps us to continue our vital work to raise awareness and provide bespoke support to those affected by Inherited Metabolic Disorders.

If you have any activities planned, we would love to hear about them. Please get in touch with our Marketing and Fundraising Officer, Maggie, on margaret@metabolicsupportuk.org or 0845 241 2173, and we will support and promote your activities as much as we can!

An Introduction to Genetic Counselling

Posted on February 6, 2020 by Maggie Allan

One of the key facts of Inherited Metabolic Disorders are that they are inherited and part of your genetic makeup. When you discover that you or your child has an Inherited Metabolic Disorder, you may look into genetic testing to see if you’re a carrier of the condition and how this might have an impact on a future pregnancy. Here we’re giving a quick introduction to Genetic Counselling and how you might benefit from this.

What is Genetic Counselling?

Genetic Counselling is a service offered to people who are, or who may be, genetically linked to an inherited condition, including:

Anyone diagnosed with a rare genetic disorder and their families.
Expectant parents undergoing prenatal testing.
Adults looking to learn more about their risk of inheritance.

Genetic Counselling is available prior to genetic testing as well as during and after the test, to ensure that the process is fully explained and understood, and to provide a safe place to discuss feelings, thoughts and ideas. When accessing Genetic Counselling, everyone is different. Each person has their own worries and concerns, their own reasons for attending, and different family dynamics to consider. The Genetic Counsellor will provide empathy and understanding, and remain impartial throughout the process, to enable you to discuss your emotions as you learn more about the tests available, the risks of inheritance, and any results and their implications.

What should I expect from my appointments?

During a Genetic Counselling session, the Genetic Counsellor will try to gain an understanding of your family history, including any history of medical problems and specific conditions within the family, which will help identify the risk of inheriting a condition. This section also helps the Genetic Counsellor understand your relationships with other family members.

The Counsellor will discuss any current understanding that you may have about inheritance. You will be introduced to the Genetic Counsellor’s interpretation of your family’s medical history, and inheritance patterns may be explained to you through drawings or diagrams, to help you understand the facts. They will answer any questions and concerns that you may have as well as discussing how you may feel about this information.

They will discuss any genetic testing that may be available and will fully explain the process to you. A genetic test inevitably causes anxiety and can be stressful, especially whilst waiting for results. The Counsellor will discuss your feelings with you and help you make sense of your thoughts and concerns. They will also signpost you to any resources which may help you.

If you receive a positive result, the Counsellor will talk through your reaction to this news, explore your feelings, and discuss this with you. They will provide you with plenty of information and support to empower you to make informed choices and feel able to talk to other family members. If your result has shown that you are likely to develop the condition later in life, the Genetic Counsellor will help you adjust to this and make sense of any required steps to monitor and manage the condition.

It is the role of Genetic Counsellors to ensure that you have fully understood the inheritance patterns, genetic testing process and the result, and that they provide a safe space to discuss concerns and worries. At the Metabolic Clinics, you will often find Genetic Counsellors who specialise in Metabolic conditions, and who work as part of the multidisciplinary team involved in your, or your child’s, care.

This video from the Genetics Education Programme at Health Education England provides an introduction to the role of Genetic Counsellors: https://tinyurl.com/y4t4ueqe

If you would like more information on Genetic Counselling or some advice on whether it would be beneficial to your care, please contact our Core Services team on contact@metabolicsupportuk.org or 0845 241 2173.

January Guest Post: Nutricia Metabolics

Posted on January 16, 2020 by Maggie Allan

Happy New Year and welcome to 2020. We had a great break over the festive season and we are back again with more delicious low protein recipes for you to try at home this year.

Have you made any new year resolutions or commitments? If you wish to expand your low protein recipe portfolio in 2020, then we are here to help. Don’t forget to share your low protein creations with us on social media and if you would like to receive a copy of any of our low protein recipe books, please speak to your dietitian, who can help organise this.

From everyone at Nutricia Metabolics, we wish you and your family a very happy and peaceful new year.

Best regards,

Amy at Nutricia Metabolics

Recipes of the Month

Creamy Avocado Pasta:

Please click on the photo to see the recipe!

Vegetable Risotto:

Please click on the photo to see the recipe!

You can keep up-to-date with Nutricia Metabolics on social media too!

Facebook: Low Protein Connect
Instagram: @lowproconnect
Twitter: @lowproconnect
YouTube: LowProteinConnect

Is there a topic that you would like to read about? Or maybe you have an idea for our Recipe of the Month? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

December Guest Post: Nutricia Metabolics

Posted on December 19, 2019 by Maggie Allan

Are you getting in the holiday spirit? Regardless of the feast that you are celebrating, this time of the year feels super magical and exciting.

Our low protein recipes of the month are much loved recipes from our website, Low Protein Connect, and we hope you enjoy them too! Don’t forget to share your low protein creations with us on social media and if you’d like to receive a copy of any of our low protein recipe books, please speak to your dietitian who can help organise this.

From everyone at Nutricia Metabolics, we wish you and your family a very happy and peaceful holiday.

Best regards,

Amy at Nutricia Metabolics

Recipes of the Month

Christmas Cake:

Please click on the photo to see the recipe!

Herb Stuffing:

Please click on the photo to see the recipe!

You can keep up-to-date with Nutricia Metabolics on social media too!

Facebook: Low Protein Connect
Instagram: @lowproconnect
Twitter: @lowproconnect
YouTube: LowProteinConnect

Is there a topic that you would like to read about? Or maybe you have an idea for our “Recipe of the Month”? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

A – Z of Fundraising Ideas: G

Posted on December 13, 2019 by Maggie Allan

Continuing our blog series of fundraising ideas, today is brought to you by the letter G!

Golf Day – If golf is your thing, why not organise a charity golf day by gathering a few of your golfing buddies and challenging them to a day of the beautiful game? Organise a dinner for family and friends to attend after the golfing champions have returned from their day too!

Girls Night – Have a night to celebrate you and your gals! This could be done by hosting a pamper session, a cocktail masterclass, or maybe a dinner. Whatever you want to do, have a night to chill with your girls in support of charity.

Gig – Any music lover can get involved in fundraising by hosting a gig. This could be at your local pub or in your living room with all funds going towards your chosen charity.

Games Night – Regardless of whether you want to play more traditional board games or video games, why not host a games night for everyone to enjoy? You could get everyone to donate to take part and offer refreshments at an additional cost. Get a leader board going and see who your champion gamer will be!

Give it Up! – We all know how difficult it is to give up your favourite things. Think of your favourite food, drink or app, and give it up as part of a sponsored challenge in support of your chosen charity! Good luck!

Gift Aid – This is an easy way to give, which helps charities and doesn’t cost you anything! Make sure you fill out a gift aid form if you’re giving to charity. This means they can claim back on the tax on your donations!

Guessing Games – We’ve all seen charity guessing games, such as “guess the number of sweets in the jar” and “guess the name of the teddy bear”. Regardless, it’s a good way to fundraise and a fun game to play!

Gym Challenge – A lot of gyms offer certain courses, whether it’s a weight loss, fitness or bootcamp course. Consider getting friends to sponsor you to attend one and complete it!

Some of these activities are great as stand-alone events, and some can be run together to support a bigger event.

Guest Blog: Christmas with an IMD

Posted on December 5, 2019 by Maggie Allan

As another Christmas approaches us, our guest blogger, Chloe, reflects on her experiences of the holiday as a young child with PKU.

“Growing up with an Inherited Metabolic Disorder can be challenging at times – you can’t always enjoy even the simplest of things in the same way as everyone else. When I think back to what it was like for me growing up with Phenylketonuria (PKU), holidays such as Easter and Christmas stand out in my mind as being some of the most challenging times. They sometimes felt complicated and filled with worry. Although my condition is now much more manageable in my adulthood, this hasn’t always been the case. I have certainly experienced many Christmases feeling awkward at parties and missing out on exciting festive foods. Still, my family have always made an effort to make me feel included in the Christmas celebrations in some way or another.

My earliest childhood memories of Christmas include a cross-stitched advent calendar, which my auntie made for me. As an alternative to the usual chocolate advent calendar, my parents used to fill mine with protein-free sweets. I found, as most young children do (and even as an adult now), having an advent calendar with which to count down to the special day was one of the best parts of Christmas – I’m so glad I’ve always been able to take part in this tradition.

My parents had to take extra care when planning my meals around this time, particularly if we were going to a family or friend’s party, so that I had enough of my protein allowance left over for a Christmas treat, or so I could indulge a bit more in the buffet food. Although, this didn’t always go to plan. The tradition was that I spent Boxing Day with my dad. Then later that evening, I would go with my mum to my aunt and uncle’s house. My mum would always tell me to save some of my protein allowance for the evening, but there were a few times when I returned with less than we had planned. Unfortunately, on those occasions, I had to miss out. However, my parents were very considerate and never ate anything which I couldn’t have in front of me – I didn’t realise this until recently when I was reminiscing about past Christmases with them – I’m so grateful that they did this but I also feel a little guilty because it meant they had to miss out too!

Despite me missing out on some of the exciting food, I always had my own low-protein food on which to rely. But, as I got older, I began to feel more embarrassed and awkward about taking this with me. I began to notice that it didn’t quite look the same as everyone else’s. I felt so self-conscious and anxious, especially if I was around people that I’d not met before because I knew questions were bound to be asked.

When it came to my Christmas dinner, I always enjoyed filling up on a variety of vegetables, or sometimes my mum would bake me a delicious vegetable pie (this is what I still do now). Christmas dinner can be whatever you make it. You don’t always have to stick to traditions. As long as you are happy and having fun, that’s all that matters.

I’ve come to realise that whether you have PKU like me or another similar metabolic condition, you shouldn’t let it stress you out too much and you certainly shouldn’t let it stop you from having a wonderful Christmas!”

Thank you to Chloe for sharing your experiences of Christmas with us. We hope you and your family have a magical Christmas this year!

If you would like to share your story or experiences of living with an Inherited Metabolic Disorder, please contact Maggie on margaret@metabolicsupportuk.org or 0845 241 2173. We look forward to hearing from you!

Meet the Ambassador: Hannah Smith!

Posted on November 29, 2019 by Maggie Allan

Last November, we launched our Community Ambassador programme. Our new Ambassadors are doing a great job supporting the Inherited Metabolic Disorders community in their local areas, enabling us to reach many more patients and families. They are also helping us spread the word by raising awareness and fundraising. Today, meet our Ambassador, Hannah Smith!

Hello, my name is Hannah Smith and I’m 27 years old.
I was born very poorly but finally diagnosed with OTC Deficiency at 14 months old.
I was constantly in and out of hospital and missed lots of school. Things were made worse when I was diagnosed as diabetic when I was 11 years old.
I always tried to keep a positive attitude but often felt like nobody understood how I felt, as I didn’t know anyone else with OTC Deficiency. So, I want to share my story and help others not feel so alone.
In 2017, I was informed I would need a liver transplant, as my OTC Deficiency had become unmanageable. In June 2018, I had a liver transplant and have so far been very healthy and happy – enjoying my new life – whilst on a mission to spread awareness of both Inherited Metabolic Disorders and organ donation.

Q&A:
Why did you want to become a Metabolic Support UK Community Ambassador?

To spread awareness and share my own experiences, to hopefully allow others to relate and not feel isolated.

How are you planning to raise awareness of the services Metabolic Support UK provide?

Bake sales, 5k fun runs and through my social media page on Instagram @liveandletliver if you wish to follow!

Where is the strangest place you have raised awareness of Inherited Metabolic Disorders?

I think the strangest place would be at my own wedding!

What’s the hardest thing about living with an Inherited Metabolic Disorder?

The hardest thing would be feeling like people don’t understand. Since I had my liver transplant, it has been so refreshing to hear of other people’s experiences of OTC Deficiency.

In the IMD community, who has had the greatest impact upon you?

My Consultant and Dietitian.

What’s in your fridge?

In my fridge, I have milk, diet coke, yoghurt, fruit, potatoes and chocolate.

Strictly Come Dancing, I’m a Celebrity, or Great British Bake Off?

Strictly Come Dancing.

What was the last film you watched?

The last film that I watched was “Blended”.

Caribbean coast or snow topped mountains?

Caribbean beach.

If you were given an extra hour today, how would you spend it?

I would be by the fire in the garden with my husband and dog.

Favourite comfort food?

Cheese and bacon burger.

What would the theme tune to your life be?

“This is Me” from the Greatest Showman.

Who do you follow on Twitter?

I don’t use Twitter.

If you or your child lives with OTC and would like to connect with Hannah, please get in touch with Team Metabolic’s Julie on julie@metabolicsupportuk.org

If Hannah has inspired you to become a Metabolic Support UK Community Ambassador, please contact Julie on julie@metabolicsupportuk.org or visit https://www.metabolicsupportuk.org/ambassador/

November Guest Post: Nutricia Metabolics

Posted on November 21, 2019 by Maggie Allan

We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.

There’s no doubt about it, the November evenings can be dark and long. Don’t worry, we have lots of articles and videos on Low Protein Connect to keep your mind occupied. This video about the importance of screening in GA1 is extremely informative: https://www.lowproteinconnect.com/Your-World/GA1—The-importance-of-screening/

Our low protein recipe of the month is warming for the body and soul. Ideal on these chilly evenings. Don’t forget to share your low protein creations with us on social media and if you’d like to receive a copy of any of our low protein recipe books, please speak to your dietitian who can help organise this.

Best regards,

Amy at Nutricia Metabolics

Recipe of the Month

Creamy Mustard Pasta:

Please click on the photo to see the recipe!

You can keep up-to-date with Nutricia Metabolics on social media too!

Facebook: Low Protein Connect
Instagram: @lowproconnect
Twitter: @lowproconnect
YouTube: LowProteinConnect

Is there a topic that you would like to read about? Or maybe you have an idea for our Recipe of the Month? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

A – Z of Fundraising Ideas: F

Posted on November 7, 2019November 14, 2019 by Maggie Allan

Continuing our blog series of fundraising ideas, today is brought to you by the letter F!

Food Festival – Organise a day or weekend to celebrate the wonders of food! Encourage others to bring a dish of their choice to share with others. You could charge people for each food they purchase, or a blanket fee for everyone to try all the dishes on offer. Get people to sell off their leftover baked and cooked goods at the end, and auction off some show-stopper cakes and food hampers!

Film Night – Film, popcorn and good company – an amazing mix of things! Encourage friends to come and join you for a night of movies and good laughs, with food and drink provided for a fee. All you need now is a few blankets to make you feel extra cosy!

Facebook – If there’s a cause you feel passionate about, why not set up a Facebook Fundraiser and let everyone know why you want to raise money for this cause!

Flyers – Flyers can be a great way to raise awareness of a charity and encourage donations to them. Why not ask your favourite charity for some flyers? You can hand these out locally and encourage support for your cause.

Family Fun Day – One way to keep kids and adults alike entertained is to hold a family fun day, which you can do in support of charity. You can organise lots of games and offer refreshments. A great way to raise awareness about your charity, whilst having fun!

Fright Night – Spend a night in a spooky hotel; host a horror movie night; or play some Halloween games. Host a fright night event for a fee; or get sponsored to get scared silly elsewhere. Just beware of the ghouls and ghosts!

Face Painting – If you’re going to a school fete or local festival, why not offer your face painting services with all the proceeds going to charity? Get practising your tiger and spidermen faces, as there could be a few of those to do!

Football Match – Get a couple of teams together and have a charity kickabout! Encourage the match participants and viewers to donate for attending, and have some refreshments available at half time to fuel up the footballers’ bellies and fire for the game!

Fancy-Dress Party – Invite guests to come to your very own fancy-dress party! Get your guests to donate to attend in a special attire and hold a fancy-dress competition for the best outfit! Aside from the laughs that you’ll undoubtedly get from the costumes, you’ll also get some money raised for charity!

Some of these activities are great as stand-alone events, and some can be run together to support a bigger event.

Our First NextGen Conference

Posted on October 25, 2019 by Maggie Allan

This year’s conference was extra special, as it was also the date of our first NextGen Conference! We were delighted to welcome young people aged 12-25 to come and join our Young Person’s Project Officer, Sally, and a variety of other speakers, to speak about their condition and ways they could manage growing up with an Inherited Metabolic Disorder. On the day, one of our guest bloggers, Chloe, was on hand to cover the whole day on social media (see NextGen‘s Instagram page: @metabolic_nextgen for all the coverage!) and wrote this blog on how the day went!

“A few months ago, Metabolic Support UK invited me to work with them on their new emerging project, “NextGen” (more about this later); manage their Instagram account for the day; and, of course, create a blog post for them afterwards! Some of you may remember that I’ve done some blogging for Metabolic Support UK in the past (my most recent post was about my trip to Cornwall – https://www.metabolicsupportuk.org/guest-blog-chloes-cornwall-adventure-preparing-for-an-adventure-with-an-imd-part-3/), but it was still such an honour to be asked to work with them. I had heard of their conference and was already considering attending, since I missed out on the NSPKU’s conference earlier this year. So this worked out well!

I travelled to Birmingham for the conference, both excited and extremely nervous. Those closest to me will know how this event was such a massive step out of my comfort zone, but something I was absolutely determined not to miss out on. I found travelling to Birmingham was the easiest part for me (I think my solo trip to Cornwall had helped prepare me for this aspect). The conference itself was what I was most anxious about. I was worried about meeting a bunch of new people and interacting with them in the activities. However, I surprised myself and found that once the initial ice-breaking was over, I got into the swing of things and really enjoyed myself!

What is NextGen?

NextGen is a community where young people aged 12- 25 living with Inherited Metabolic Disorders can come together to make friends and share their experiences with one another. If you’re aged 19-25, you can register as a Delegate, which means you also get to engage with this community; help towards research; and become an advocate for the patients, having already grown up with an IMD yourself (I am also a Delegate). I think that NextGen is essential to the IMD community. Simply having the opportunity to meet others with your condition, or one similar, and have conversations about your experiences of school or mental health is so important. I still vividly remember my first NSPKU conference when I was eight years old and how it honestly changed my life. Because for the first time, I met other children like myself. These conditions are so rare. So it means people living with them rarely cross paths, but NextGen enables this to happen. Having met the young people, who are already a part of this wonderful community, has only made me realise more that it needs to continue to grow. If you are interested in joining NextGen, or perhaps have a child, who you think would love to join, please sign up. I have left Sally’s email address at the end of this post!

I had a great time working with NextGen at the conference; it’s rewarding to think that I’ve hopefully helped some of the young people I met, to feel reassured that all will be okay. But I’m also happy that I’ve helped myself. Starting up my personal blog about PKU (https://thepkulife.blogspot.com/) has enabled me to engage more with my PKU community online – I’ve “met” a whole bunch of new people over on Twitter! However, it’s very rare that I actually meet other people with PKU in person. So, it’s always a pleasant surprise when I do! At the conference, I met a man called Chris, who is a Community Ambassador for Metabolic Support UK. It was such a shock to discover that he has PKU too, but it was great to chat about our experiences.

I hope to continue to attend more events, such as Metabolic Support UK’s conferences, in the future and to continue to meet others like myself. I would encourage anyone, who isn’t already involved with Metabolic Support UK and NextGen, to get involved – it’s great to have another community, as well as NSPKU, to turn to if you ever need support.

If you’re interested in joining NextGen, email Sally on sally@metabolicsupportuk.org.”

Thank you to Chloe for sharing your experience of our NextGen Conference! We’re really glad you enjoyed the day and thank you for joining us and helping make our first NextGen Conference such a success!

If you would like any more information on NextGen, please contact Sally on sally@metabolicsupportuk.org.

If you would be interested in writing a guest blog for Metabolic Support UK, like Chloe, please contact Maggie on margaret@metabolicsupportuk.org.

A – Z of Fundraising Ideas: E

Posted on October 3, 2019 by Maggie Allan

Continuing our blog series of fundraising ideas, today is brought to you by the letter E!

Whether you’re a first time or regular fundraiser, we all need a little inspiration sometimes. So, to give you a helping hand, we are putting all of our favourite fundraising ideas together in a handy series of blog posts!

Easter Egg Hunt – If it’s Easter time and you’re trying to find a way to keep the kids entertained, you might organise an Easter egg hunt. However, you could make it into a bigger event and invite lots of people to partake for donations to your favourite charity!

Easter Party – To keep kids and parents entertained at Easter, host an Easter party with an Easter egg hunt, pin the tail on the Easter bunny, and an Easter egg piñata game. Lots of fun and opportunity to fundraise for charity!

Eating Competition – Challenge your friends to an eating competition in support of your favourite charity! Think of games such as “who is the last one to lick their lips after eating a sugary doughnut”, or bake a variety of cakes or dishes and see who can guess the correct ingredients in each dish!

Easyfundraising – Visit this amazing website where you can do all your weekly shopping, as well shopping for clothes, holidays and more, where you can also do a bit of fundraising! Check out their website on the following link, and don’t forget to select Metabolic Support UK as your chosen charity (!): https://www.easyfundraising.org.uk/

Exercise Challenge – Pick a sport and set yourself a goal! This could be aiming to complete 100 km of cycling, running or swimming in a month; aiming to run your first 5k; or something completely different! Whatever you choose, get people to sponsor you and to push you towards achieving your goal!

Experience Challenge – This could be a variety of things, such as a sponsored sky-dive or bungee jump. Or you could challenge yourself to conquer a fear. For example, scared of spiders? Why not get sponsored to hold a tarantula and conquer that fear? Challenge yourself to embrace a new experience!

Some of these activities are great as stand-alone events, and some can be run together to support a bigger event.

September Guest Post: Nutricia Metabolics

Posted on September 26, 2019 by Maggie Allan

We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.

We hope everyone is settled back into school, uni and work after the summer break. September can be a great month for setting new goals and intentions for the remainder of the year. For some people, your end-of-year intention may be to become more organised with your low protein diet.

Our low protein recipes of the month are ideal for batch cooking at the beginning of the week. This is a simple habit that ensures you will always have a wholesome low protein dinner waiting for you in the evening. Don’t forget to share your low protein creations with us on social media and if you’d like to receive a copy of any of our low protein recipe books, please speak to your dietitian who can help organise this.

Best regards,

Amy at Nutricia Metabolics

Recipes of the Month

Spaghetti Bolognaise:

Please click on the photo to see the recipe!

Thai Jackfruit Curry:

Please click on the photo to see the recipe!

You can keep up-to-date with Nutricia Metabolics on social media too!

Facebook: Low Protein Connect
Instagram: @lowproconnect
Twitter: @lowproconnect
YouTube:LowProteinConnect

Is there a topic that you would like to read about? Or maybe you have an idea for our Recipe of the Month? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

Learning about the Patients as Educators Project

Posted on September 17, 2019 by Maggie Allan

At Metabolic Support UK, we make it our mission to raise as much awareness as possible of Inherited Metabolic Disorders amongst the public and healthcare professionals. Recently, Team Metabolic’s Jess and Julie went to Northern General Hospital in Sheffield to learn about their Patients as Educators project, as Jess explains more about.

“On 20^th August 2019, Julie and I had the pleasure of attending a meeting with the Patients as Educators team at the Northern General Hospital in Sheffield. We met with Emma Hudson, Patients as Educators Administrator, and Martin Hague, the Patients as Educators Clinical Skills Manager. Emma, Martin and the team were very welcoming and keen to learn more about Metabolic Support UK, the patients and families we support and how we can work together.

The Patients as Educators Programme was developed in 2004 to provide students studying medical, nursing, dental and orthoptics degrees with the opportunity to meet and learn from real patients about how their condition affects them. Patients can get involved in a number of ways, such as speaking to students about their condition and experiences; undergoing a basic physical examination where students do simple physical examinations under the supervision of a clinical tutor and a final clinical assessment; partaking in a mixture of patient history and physical examinations. Volunteers, who do not have any medical conditions, are also welcomed onto the programme, to help develop students’ communication and consultation skills.

A few months prior to the meeting, Julie and I were reviewing how we could raise awareness of Inherited Metabolic Disorders amongst trainee nurses and doctors. Following a bit of research, Julie contacted Emma and Martin and asked if we could arrange a meeting to learn more about the work they do and how we could work together. It also helped that Julie’s godmother has worked closely with the team and highly recommended them.

The Patients as Educators team provide a vital resource for trainee doctors and nurses and recognise the value of sharing patient experiences and stories with students, to enhance and improve their curriculum and learning. Martin advised that patient stories and interviews tend to have a greater impact on students whilst they are learning, as they can hear first-hand the trials and tribulations patients and families face from diagnosis onwards. Patients as Educators also facilitate a carers module, so medical students can learn first-hand what it’s like to care for someone.

Julie and I were interested to learn about the most recent transgender project the team have been working on and the innovative ways the team use real life patient stories to educate and train medical students. Martin and Emma were also fascinated to learn all about Inherited Metabolic Disorders and the work of Metabolic Support UK, and it soon became apparent there was a great opportunity for us to do some collaborative working.

Our initial agreements are still in the planning process and may change but we are very excited to have gained this opportunity to work with such a brilliant team. Over the next few months, we will be contacting our patient community to inform them about the opportunities available and hopefully conducting some interviews in the Patients as Educators filming studio!

This opportunity will allow us to raise further awareness of Inherited Metabolic Disorders, in the hope that the next generation of medical students will be able to recognise the signs and symptoms of Inherited Metabolic Disorders and make quicker and more accurate diagnoses.

We are very much looking forward to the next 12 months and working with Martin, Emma and the Patient as Educators team in Sheffield.”

If you would like to learn more about this project or how you can get involved in helping us raise awareness through the Patients as Educators project, please contact Jess on jess@metabolicsupportuk.org or 0845 241 2173.

August Guest Post: Nutricia Metabolics

Posted on August 20, 2019 by Maggie Allan

We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.

We hope everyone is enjoying their time off school this summer. August can be a great month for getting out and about and enjoying some of the great amenities and fun activities that the UK has to offer.

Our low protein recipes of the month are ideal for packing up if you are going out for the day. Don’t forget to share your low protein creations with us on social media and if you’d like to receive a copy of our low protein Italian recipe book, speak to your dietitian who can help organise this.

Best regards,

Amy at Nutricia Metabolics

Recipes of the Month

Breadsticks:

Please click on the photo to see the recipe!

Roasted Pepper & Chilli Hummus:

Please click on the photo to see the recipe!

You can keep up-to-date with Nutricia Metabolics on social media too!

Facebook: Low Protein Connect
Instagram: @lowproconnect
Twitter: @lowproconnect
YouTube:LowProteinConnect

Is there a topic that you would like to read about? Or maybe you have an idea for our Recipe of the Month? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

Meet the Ambassador: Tanya Brindle!

Posted on August 16, 2019 by Maggie Allan

Last November, we launched our Community Ambassador programme. We now have 8 amazing Ambassadors, who are supporting the Inherited Metabolic Disorder community in their local areas, enabling us to reach many more patients and families. They are also helping us spread the word by raising awareness and fundraising. Today, we’d like you to meet our Ambassador, Tanya Brindle!

Why did you want to become an Ambassador for Metabolic Support UK?

**Tanya with Daughter, Paige, and Husband, Terry at our Patient Day in 2018**

To make a difference, raise awareness, support and advocate for others, and to mostly show Paige, my daughter, who lives with Salt Wasting Congenital Adrenal Hyperplasia (SWCAH) that life need have no limitations.

How are you planning to raise awareness about the services Metabolic Support UK provide?

By hosting fundraising events in my local area and participating in meet and greet/patient days at Royal Manchester Children’s Hospital.

Where is the strangest place you have raised awareness about Inherited Metabolic Disorders?

Whilst running in an event and raising money for Metabolic Support UK.

What’s the hardest thing about living, or living with someone, with an Inherited Metabolic Disorder?

Never being able to switch off or relax and always having to be one step ahead. It can be really nerve-wracking not knowing when the next crisis or illness will hit.

In the Inherited Metabolic Disorder community, who has had the greatest impact on you?

Our London Marathoners! I mean, it is a personal life time goal. However, I need years more training to run that. So, don’t go signing me up yet haha!

What’s in your fridge?

The mundane dieting stuff! I have a lot of Slimming world friendly foods with a tray of syns…..which is mostly chocolate!

What’s your favourite comfort food?

**Tanya, Paige (daughter) and Terry (husband) Brindle doing the Wigan 5-Mile Cycling Event for Metabolic Support UK**

“Come on, I’m a woman!” It has to be CHOCOLATE and a glass of gin!

Strictly Come Dancing, I’m a Celebrity or Great British Bake Off?

100% I’m a Celeb!

If you were given an extra hour today, how would you spend it?

I want to say sleep but that would be a lie as I rarely sleep! So, I’d probably just have some well-deserved “me” time.

What was the last film you watched?

Dear John…I mean who doesn’t like a bit of Channing Tatum!

Caribbean beach or snow top mountains?

Neither, I’m a Majorca girl and a touring caravaner, who enjoys exploring the secrets of the British countryside.

What would be a good theme song for your life?

Greatest Showman – This is me.

If you or your child lives with an Inherited Metabolic Disorder and would like to connect with Tanya, please get in touch with Team Metabolic’s Julie on julie@metabolicsupportuk.org

If Tanya has inspired you to become a Metabolic Support UK Community Ambassador, please contact Julie on julie@metabolicsupportuk.org or visit https://www.metabolicsupportuk.org/ambassador/

Bea and Harriet’s Snowdon Climb!

Posted on August 9, 2019 by Maggie Allan

Without our amazing fundraisers, we wouldn’t be able to help our special community and have an active role in supporting new and life-changing treatments for our families and patients.

At the end of July, Bea and Mum, Harriet, climbed Snowdon to raise awareness of Inherited Metabolic Disorders and fundraise, to help us support more and more families and patients with Inherited Metabolic Disorders. Bea and Harriet completed their Snowdon challenge after a gruelling 5 hours of walking and raised an incredible £480! Our Marketing and Fundraising Officer, Maggie, caught up with Harriet to see how it all went!

Hi Harriet, thanks for taking the time to talk to us about your fundraiser! What did your fundraiser entail?

We climbed Snowdon – the largest mountain in Wales and England! We went up Snowdon’s Llanberis route, which is the longest and most popular route.

How many people got involved with your fundraiser?

It was just me and my daughter, Bea!

Why did you want to organise a fundraiser for Metabolic Support UK?

Bea’s brother died of a metabolic disorder in August 2007. She never met him. This walk was in his memory.

How did the climb up Snowdon go?

The route was very steep at the start. So, the first half hour was tough on the legs and lungs. Bea munched her way through a whole month’s ration of sweets to keep her energy levels up. It was busy with family groups, serious walkers, fell runners and other fundraiser groups. An hour from the top, we walked through clouds and got soaked. It was also windy and cold. It took 3 hours to arrive at the summit – we only had brief stops for water and snacks because we felt like we were on a mission! At the top, we gathered with dozens of others in the lea of the café to have lunch. It was a difficult walk down for the first 40 minutes, as it was very steep with loose ground underfoot and hundreds of people coming the other way. It was like Piccadilly Circus! We got back down at 2:30pm – the whole route taking 5 and a half hours and 25,472 steps. We then celebrated with ice cream and a sit down!

Have you got any other fundraisers planned for the near future?

Not yet but we’ll keep you posted!

A HUGE thank you to Bea and Harriet for climbing Snowdon for Metabolic Support UK! We really appreciate your support and you have helped raise lots of awareness of Inherited Metabolic Disorders as well as vital donations to help us support more and more families and patients with these rare conditions.

If Bea and Harriet have inspired you to fundraise, get in touch with our Marketing and Fundraising Officer, Maggie, on margaret@metabolicsupportuk.org or 0845 241 2173, to receive some fundraising materials for your event and see how we can promote your fundraiser!

World Friendship Day: Connect with the Metabolic Community!

Posted on July 30, 2019 by Maggie Allan

Friendship is very important to Metabolic Support UK. We see the members of our community as very special friends to us, and look to support our patients and families in every way we can. We similarly make it our mission to connect our community through multiple projects and to reduce the isolation often found in the rare disease world. On World Friendship Day, we want to share how you can become an even better friend of Metabolic Support UK and how you can connect and find friends within the Inherited Metabolic Disorders world!

Metabolic Connect

Metabolic Connect is one of our most important programmes and is where we connect families and patients with similar conditions with each other. We often hear that being connected with someone else who knows exactly what you’re going through is completely invaluable and many people who have joined this scheme have met lifelong friends. To meet others with the same condition as you, please see the following link: https://www.metabolicsupportuk.org/metabolic-connect/

Friendship Scheme

Our Friendship scheme is our regular giving scheme and includes many great benefits, including the receipt of our quarterly magazine, Metabolic Matters; discounts on translations of your disorder if you’re going on holiday; and one of our new health passports! By becoming a Friend of Metabolic Support UK, you are directly helping us support more and more families and patients with Inherited Metabolic Disorders. Plus, our magazine can keep you up-to-date with the latest developments happening in the Inherited Metabolic Disorders world and show how you can get involved with Metabolic Support UK and our special community! Sign-up to our Friendship scheme here: https://www.metabolicsupportuk.org/becomeafriend/

Ambassador

Become a Community Ambassador and help us raise awareness of Inherited Metabolic Disorders! We launched our Community Ambassador scheme last year and now have 8 amazing Ambassadors spreading the word about Inherited Metabolic Disorders and fundraising for us. By signing up to our Ambassador scheme, you can make a real difference by connecting the Inherited Metabolic Disorders community in your local area; fundraising and helping us support more and more families and patients with Inherited Metabolic Disorders; and have the opportunity to meet others with Inherited Metabolic Disorders! For more information on our Ambassador scheme, please see the following link: https://www.metabolicsupportuk.org/ambassador/

Fundraising

Our fundraisers are absolutely invaluable. We love seeing what ideas our community fundraisers have, including running marathons, half marathons and 10Ks; climbing huge mountains; doing fantastic bake sales and much more! Most importantly, we are inspired by our community’s efforts to support patients and families with Inherited Metabolic Disorders. Every penny fundraised helps us reach out to more and more families and patients with Inherited Metabolic Disorders and manage projects aimed at supporting our special community. By fundraising, you are helping support our incredible community, and you may even make a few more friends with getting others involved in your fundraising activities! If you would like some support with a fundraiser or some ideas for your first fundraiser, get in touch with our Marketing and Fundraising Officer, Maggie, on margaret@metabolicsupportuk.org

There are plenty of ways to become an even better friend of Metabolic Support UK and to make new friends within our special community. We hope these ideas can help inspire you!

For more information on any of our projects and to see how we can best support you, please contact us on contact@metabolicsupportuk.org or 0845 241 2173.

July Guest Post: Nutricia Metabolics

Posted on July 26, 2019 by Maggie Allan

We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.

We hope you are enjoying the summer so far. While the weather has been a little unsettled, it hasn’t stopped us getting out for a few picnics every now and again.

Our low protein recipes of the month are inspired by the summer months and are ideal for packing up if you are going for a picnic. Don’t forget to share your low protein creations with us on social media and if you’d like to receive a copy of our low protein Italian recipe book, speak to your dietitian who can help organise this.

Best regards,

Amy at Nutricia Metabolics

Recipes of the Month

Cherry & Coconut Scones:

Please click on the photo to see the recipe!

Strawberries & Cream Cupcakes:

Please click on the photo to see the recipe!

You can keep up-to-date with Nutricia Metabolics on social media too!

Facebook: Low Protein Connect
Instagram: @lowproconnect
Twitter: @lowproconnect
YouTube:LowProteinConnect

Is there a topic that you would like to read about? Or maybe you have an idea for our Recipe of the Month? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

Learning about Young Patient Advocacy

Posted on July 19, 2019 by Maggie Allan

A couple of weeks ago, Team Metabolic’s Young Person’s Project Officer, Sally, got the opportunity to go to Vienna to attend Summer Training for Young Patient Advocates led by the European Patients’ Forum, to learn more about how young people can be the best patient advocates for their condition and how we can ensure their voices are heard in the important decisions facing them – a topic very close to our hearts. Here, Sally, explains a bit more about her experience at this incredible course in Vienna and how it will shape our young people’s support programme, NextGen.

Why did you go to Vienna?

**Sally, our Young Person’s Project Officer (pictured in the middle) with Marco Greco, the EPF president, (pictured left) and a fellow summer school attendee and patient advocate (pictured right)**

I was lucky enough to get a place on the Summer Training for Young Patient Advocates, which was created by the European Patients’ Forum (EPF), an umbrella organisation that works with patient groups in public health and health advocacy across Europe. This is the third year that they’ve run the summer school, as part of their ambition to increase the voice and influence of young people in European healthcare and decision-making, by developing the skills and knowledge of young patient advocates.

What did you do at the training and how did it help?

This year’s theme was ethics, and the training was designed to get us thinking about what it means to be an advocate and to represent others; how we can grow in our work; and the ethical questions we might face – topics that are so important to our NextGen programme. The agenda was really dynamic – there were some presentations but a lot of workshops, discussions and collaboration.
The sessions were also kick-started by talks from expert speakers, including the EPF President, Marco Greco, a Patient Engagement Specialist from the European Medicines Agency and a leading advocate for HIV positive patients. They all shared their own insights, tips and experiences, and took time to answer our questions.

Did you meet other patient advocates with Inherited Metabolic Disorders?

I didn’t! But that meant it was a great opportunity to raise the profile of these disorders with other people working with rare diseases, who hadn’t heard about Inherited Metabolic Disorders before. The attendees represented a wide range of chronic disorders and came from all over Europe. They were mainly patients, but some were non-patients working as advocates or involved in healthcare. So, it was fascinating to hear where everyone had come from and why they do the work they do.

What was the best thing about the training?

This is the best training I’ve ever experienced (and I’ve done my fair share)! But that wasn’t just because of the quality of the information but the way in which the whole time was organised, to allow us to really open up; get creative; and connect with each other. For me, and for everyone there (I think!), the highlight of the training was the relationships we were able to form in such a short space of time and how much we were able to learn from each other.
We were in a perfect setting in a small hotel surrounded by parkland and just outside the city centre near the famous Schönbrunn Palace. There was time set aside for us to just hang out over food and share our stories. On the last day, we were given some time to go away and reflect on our own and then to come back together and share what we were thinking and feeling before we left Vienna, and it turned out be a really emotional afternoon!

From everything you learnt at the training, how can young people be the best patient advocates for their condition?

That’s a big question! We were given a lot of words of wisdom during the course, which I’m not sure I could do justice to here, but I’d say to any young people affected by a rare disease that your story and voice matters. If there are things you care about and want to change, now is the time for young patients to be heard; and people are starting to listen. I’d encourage anyone to find out how they can do more, such as signing up to our NextGen programme; reaching out to a patient community on social media; or learning more about groups like the EPF.

Thank you to Sally for sharing your experience at the Summer Training for Young Patient Advocates and how each young person can become the best advocate for their condition.

To learn more about our young people’s programme, NextGen, please see the following link: https://www.metabolicsupportuk.org/young-people/ , or contact Sally on sally@metabolicsupportuk.org or 0845 241 2173.

Metabolic Disorders Awareness Week 2019

Posted on July 12, 2019 by Maggie Allan

This year’s Metabolic Disorders Awareness Week took place from Monday 1^st – Sunday 7^th July 2019. This year we continued with our #MetabolicMile campaign, asking you to walk, skip, cycle, swim or space hopper a mile to show your support for patients and families living with Inherited Metabolic Disorders. Once again, we were overwhelmed by your incredible support for Metabolic Disorders Awareness Week 2019 and all you did to support it!

#MetabolicMile

We loved seeing your Metabolic Miles again this year and how creative you could get with yours! This year, Team Metabolic did their Metabolic Mile in celebrity fancy dress! Team Metabolic got inventive with their outfits, which included our Finance Administrator, Andrea, who dressed up as Charlie Chaplin; our Patient Access to Diagnosis and Treatment Researcher, Pushpa, who dressed up as Albert Einstein; and our Chief Operating Officer, Joanne, who dressed up as a crab (we know this may not strictly be celebrity themed but the outfit was too good to resist!)! We also saw other patient organisations getting involved and doing a Metabolic Mile, sharing their support for Metabolic Disorders Awareness Week and our special community! Regardless of how you did your Metabolic Mile, we loved seeing you, your colleagues, schools, friends and family getting involved and raising awareness of Inherited Metabolic Disorders!

Donations

Metabolic Disorders Awareness Week is one of the best times to raise money to help us support patients and families living with Inherited Metabolic Disorders. We are so grateful for all your donations during the week through Facebook, Metabolic Mile events and more! So far, we have raised £1,266.99, with more donations still coming in from Metabolic Mile events organised by our amazing Ambassadors! We are so grateful for your support and your donations will make a real difference. There is still time to donate to our Metabolic Mile Just Giving page! You can donate here: https://www.justgiving.com/campaigns/charity/climb/metabolicmile

Twibbon

An easy and powerful way to raise awareness of Inherited Metabolic Disorders is to change your profile picture to include the Metabolic Disorders Awareness Week Twibbon and to share your story. Sharing your story is so important in helping more people learn about Inherited Metabolic Disorders and let others, who are experiencing very similar circumstances, know that they are not alone. This year, our Twibbon was downloaded 306 times, helping us show even more support for families and patients living with Inherited Metabolic Disorders.

Thank you to everyone who supported Metabolic Disorders Awareness Week this year! Your support is completely invaluable. By sharing your stories, our social media posts and donating, you are helping us reach out to more patients and families with Inherited Metabolic Disorders and to offer support to those who really need it.

If Metabolic Disorders Awareness Week has inspired you to take on a challenge for Metabolic Support UK, please see the following page for some fundraising ideas https://www.metabolicsupportuk.org/fundraise-for-us/ or contact Maggie, our Marketing and Fundraising Officer, on margaret@metabolicsupportuk.org for some fundraising ideas or support with your event!

June Guest Post: Nutricia Metabolics

Posted on June 28, 2019 by Maggie Allan

We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.

It is a busy month here in Nutricia HQ. Our low protein Italian recipe book has been so popular that we’re now working on a reprint. Have you received your copy yet?

Our recipes of the month are inspired by the tastes of Italy and they are two of my favourites. Don’t forget to share your low protein creations with us on social media and if you’d like to receive a copy of our low protein Italian recipe book, speak to your dietitian who can help organise this.

Best regards,

Amy at Nutricia Metabolics

Recipes of the Month

Lemon & Sage Spaghetti:

Please click on the photo to see the recipe!

Roasted Butternut Squash Lasagne:

Please click on the photo to see the recipe!

You can keep up-to-date with Nutricia Metabolics on social media too!

Facebook: Low Protein Connect
Instagram: @lowproconnect
Twitter: @lowproconnect
YouTube:LowProteinConnect

Is there a topic that you would like to read about? Or maybe you have an idea for our Recipe of the Month? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

Guest Blog: Chloe’s Cornwall Adventure – Preparing for an Adventure (with an IMD!) Part 2

Posted on June 21, 2019June 21, 2019 by Maggie Allan

When you have an Inherited Metabolic Disorder, going on holiday can be a little more complicated with having to consider transporting medication, supplements and managing your condition in a new place! This summer, our guest blogger, Chloe Easton (who has Phenylketonuria (PKU)), is holidaying in Cornwall for a whole month! In the second part of Chloe’s guest blog series, she is updating us on how it’s all going!

In the second part of my blog series, I just want to give you a little update on how I am finding life in Cornwall and how things are going for me diet-wise!

If you didn’t get the chance to read my previous post, here’s a brief summary: my name’s Chloe. I’m 21 years old and live with Phenylketonuria (PKU). Currently, I’m in Cornwall and am here for an entire month on my own!

My journey down here on the train was an extremely long one! I spent just over seven hours travelling on trains but it couldn’t have gone any smoother! (Side note: it’s also one of the most beautiful train journeys I have ever taken. So, I would definitely recommend giving it a go if you haven’t). When I finally did arrive at my destination and checked into my holiday apartment, my boxes of supplement were already there waiting for me. You may remember that in my previous post I spoke about how I was planning to get my supplies delivered straight to Cornwall. Even though my Mum and I undertook some careful planning, I was still so nervous that something was going to go wrong. So, I’m very relieved to say it was a success! If you are heading on holiday this summer, I would definitely recommend speaking to your doctor to see if anything similar can be done for you because this did save me huge amounts of hassle.

This is a trip I had highly anticipated for many months and now it’s finally here it’s just flying by, which makes me even more determined to make the most of every moment. This hasn’t always been an easy task, as I have not had the greatest start with the weather. The majority of my days here so far have been either cloudy, rainy or a mixture of the two. I guess I shouldn’t expect anything less from a British summer! Despite this, I have still managed to get out and find ways to keep myself entertained. I’ve quite enjoyed sitting and writing in various cafes and taking trips to Truro and Falmouth to wander round the shops. I recently took a coach trip and was lucky enough to visit Minack Theatre and Land’s End! I’m very grateful to be here and pretty happy with how I’m choosing to spend my time. However, I won’t lie, being here on my own can have its tough moments, as it can be quite lonely at times. But I was always fully expecting this to happen. On the flip side, I absolutely love that I have complete freedom of deciding how I spend my time, as I have only myself to worry about. It depends on how you look at it, I guess!

In terms of managing my diet on my own, this is something I have become accustomed to because of university and, if anything, this trip is just filling me with more confidence, as I am completely on my own here. Instead of my parents being just an hour’s journey away from me, they are now a good eight hour’s journey in the car – they can’t really pop by to see me if I need! This is quite an intimidating thought, but at the same time it’s a great learning curve for me and I feel sure that I will come home from this trip as a stronger person.

Thank you to Chloe for sharing an update on how her Cornwall trip is going! We’re so glad you’re having a great time and that everything has gone to plan (aside from the weather!)!

Chloe also has her own personal blog where she shares her experiences of living with PKU. You can read her blog here: https://t.co/GaNPoBcy7X

If you would like some advice on travelling with an Inherited Metabolic Disorder, please see the following page https://www.metabolicsupportuk.org/travel/ or contact our Core Services Team on contact@metabolicsupportuk.org or 0845 241 2173.

A-Z of Fundraising Ideas: D

Posted on June 14, 2019 by Maggie Allan

Continuing our blog series of fundraising ideas, today is brought to you by the letter D!

Dog Walking – Do you walk your friends’ or neighbours’ dogs? Consider charging people for dog walking services and give this money to charity. Or organise a sponsored dog walk for you and your friends to do. Involving your pooches in fundraising is most definitely possible!

Dog Sitting Services – Do you often dog sit for friends and family and get gifts in return? Why not suggest they give you donations for charity instead of this gift? Happy dog, happy humans and fundraising at the same time – perfect!

Dinner Party – Host a dinner party with a theme of your choice for family and friends. You could charge people for attending your dinner party and host an auction or raffle to add to the entertainment of the evening.

Darts Competition – Contact your local pub and organise a darts competition there. You could hold a raffle on the night and see if your pub can donate a drinks tab to the lucky winner of the darts competition. Even more incentive for people to get involved!

Disco – Who doesn’t like a boogie? Music, disco lights and potentially some karaoke, and you’ve got yourself a great event and fundraiser! No need to put away your dancing shoes just yet!

Donut Eating Competition – Have you ever played the donut game of trying to eat a sugary donut without licking your lips? Or perhaps you’ve tried the donut string game, where you have to attempt to eat a donut off a washing line? Either way, why not host a donut eating competition and charge your friends to attend? Make a leader board of the winners and see who is crowned victorious!

Some of these activities are great as stand-alone events, and some can be run together to support a bigger event.

Guest blog: Chloe’s Cornwall Adventure – Preparing for an adventure (with an IMD)!

Posted on June 7, 2019 by Maggie Allan

When you have an Inherited Metabolic Disorder, going on holiday can be a little more complicated with having to consider transporting medication, supplements and managing your condition in a new place! This summer, our guest blogger, Chloe Easton (who has Phenylketonuria (PKU)), is travelling to Cornwall for a whole month! In the first part of Chloe’s guest blog series, she explains her reasons for making the big trip and the preparations she’s made to allow her trip to run as smoothly as possible!

My name is Chloe. I’m 21 years old and I have Phenylketonuria (PKU). I’m currently preparing to embark on a very exciting journey, which is now just around the corner. At the beginning of June, I am headed to Cornwall for an entire month, on my own! I think some people, to whom I have told my plans were surprised to learn that I am travelling that far alone (I am from South Yorkshire. So, it’s going to be a long journey!), but to me this is a dream come true and something that has been on my bucket list for many years now.

Why Cornwall?

I feel as if I have partly grown up in Cornwall, as every year, without fail, my family and I have holidayed along the Cornish coast and so over the years I have grown to absolutely adore the place. If you have never been to Cornwall, I would say that you absolutely must experience it! It’s such a beautiful part of the UK and (bonus) if you’re lucky enough to have some sunshine it can feel like you’re abroad. It is my true dream to one day live down there permanently and for many years now I have always wanted to spend a long length of time there if I could, even for just a summer. Now, having graduated from university and no real attachments holding me back, this felt like the right time to go for it. I never imagined that I would do it on my own and as it approaches nearer, I can’t quite believe that it’s going to happen, but I am certainly excited at the prospect of having so much time to myself in a place that I love.

How do I plan to spend my time there?

Many people have asked what it is I’m actually planning on doing when I get there. Initially I was going to work, but then my parents pointed out that why would I travel seven hours down the country after working so hard all year to save up money to then go back to work? I realised they were right – this is something I have truly always wanted to do. So, I intend to relish every moment of it that I can. I am staying somewhere that is extremely familiar to me, but I will most likely be venturing out to explore some new places whilst also spending my time bodyboarding, surfing and writing!

How do I plan on managing my metabolic condition?

Whilst I don’t like to let my metabolic disorder (PKU) get in the way of things, I have had to undertake some careful planning to ensure that I am still able to enjoy my trip as well as manage my diet. In terms of tackling my diet on my own, I feel somewhat prepared for this because of university. Three years of living away from home has given me the valuable experience I’ll need. But I have had other more challenging factors to contend with – like how I intend on transporting an entire month’s worth of supplement (along with all my belongings) down to Cornwall on the train. I am not the best at packing “light” anyway, but my PKU certainly doesn’t make this any easier. However, after speaking with my dietitian, we came up with the solution of having my supplies actually delivered to me down south. All I had to do was contact the holiday company in Cornwall to ask for their permission to have my medication delivered to their offices, with which they had no issue. My dietitian then spoke with the company who deliver my supplement and arranged this with them. Now, all that is left to do is cross my fingers and hope it all works out as planned. Although, I am going to be taking a few days’ worth of supplement with me just in case there are any issues.

Thank you to Chloe for sharing her experiences of preparing for her big trip away! We hope you have an amazing time and we can’t wait to hear how you get on! Chloe will be updating us on her adventures half-way through her stay on our blog.

Chloe also has her own personal blog where she shares her experiences of living with PKU. You can read her blog here: https://t.co/GaNPoBcy7X

May Guest Post: Nutricia Metabolics

Posted on May 31, 2019 by Maggie Allan

We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.

Hasn’t the weather been beautiful recently? There really is a feel of summer in the air and as the summer months approach, our minds often wander to delicious recipes with sweet berries.

Our recipe of the month is for pretty, low protein Strawberries and Cream Cupcakes. They are a perfect treat on a warm evening and are ideal if you’ll be tuning into Wimbledon later in the summer. Don’t forget to share your low protein creations with us on social media!

Best regards,

Amy at Nutricia Metabolics

Recipe of the Month

Strawberries & Cream Cupcakes:

To see the recipe, please click on the image!

You can keep up-to-date with Nutricia Metabolics on social media too!

Facebook: Low Protein Connect
Instagram: @lowproconnect
Twitter: @lowproconnect
YouTube: LowProteinConnect

Is there a topic that you would like to read about? Or maybe you have an idea for our Recipe of the Month? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

Guest Blog Post: Meet Ali!

Posted on May 17, 2019 by Maggie Allan

Metabolic Support UK are proud to support patients and families with Inherited Metabolic Disorders but we couldn’t do it without the help of our community and your efforts to fundraise and raise awareness of Inherited Metabolic Disorders. From your help with fundraising, we can continue to expand our services to support more patients and families with Inherited Metabolic Disorders and to develop new projects for our community.

In this blog, we’d like to introduce you to Ali, one of our amazing fundraisers and supporters, who shares her story and why she wanted to volunteer for Metabolic Support UK and help us raise awareness of Inherited Metabolic Disorders.

“Hi, I’m Ali. I’m 44 years old and my youngest daughter, Tayla, who is now aged 9, has Ornithine Transcarbamylase Deficiency (OTC). She was diagnosed in 2012 after we were rushed from Musgrove Park Hospital in Somerset to Guys St Thomas’ Hospital in London by the Children Acute Transport Service (CATS) team. It was a very distressing time for the whole family and we were told to prepare ourselves for the worst, as they honestly didn’t think Tayla was going to pull through. We were there for 3 weeks until one doctor came on duty and ran some tests for a Urea Cycle Disorder, and that’s when we were given the news that she had OTC.

We were then transferred to the Evelina Hospital in London where we spent just under 2 weeks. After that, we were transferred back to Musgrove Park Hospital for a further 3 days.

It took a while to wrap my head around the whole thing but after discussing it with my partner we decided our only option was for me to quit my job, as someone needed to be on hand for Tayla 24/7.

I decided I wanted to become a volunteer for Metabolic Support UK because I have so much time on my hands. Going from working a 50-hour week to nothing has been really frustrating for me, as from the age of 14 I’ve always worked. I’ve struggled with depression and anxiety. So, becoming a volunteer has done wonders for me, and because of all the support we have had, I just want to give something back!

I intend on holding coffee mornings and cake sales, as due to me unfortunately fracturing my knee 4 years ago, I’m unable to do running or anything like that.

I set up a fundraising post on my Facebook profile and within a week, I had already raised £130. I do have a larger fundraising goal, which I’m very determined to reach.

I think more awareness needs to be raised as before Tayla was diagnosed I never even knew Metabolic Disorders existed! I’ve already had some amazing support from family and friends, who are willing to help with any events I hold. Being able to become a volunteer really has changed my life and it’s really great that people want to help and listen.

Tayla even decided she wanted to go as the word medication for World Book Day, so she could show all her friends exactly what she needs to keep her liver working properly.”

Thank you so much for your support, Ali! Your support is hugely appreciated and will enable us to reach out to more people with Inherited Metabolic Disorders.

If Ali has inspired you to volunteer or fundraise for Metabolic Support UK, please contact Maggie on margaret@metabolicsupportuk.org or 0845 241 2173 for some fundraising ideas and for any support.

Or consider becoming an Ambassador! See the following page for further details of our Ambassador programme: https://www.metabolicsupportuk.org/ambassador/

Team Metabolic’s Marathon Effort!

Posted on May 10, 2019 by Maggie Allan

On Sunday 28^th April, it was the London Marathon! Every year, Metabolic Support UK receive 15 places for the London Marathon. The London Marathon is our biggest fundraiser every year and allows us to continue providing bespoke support to our community. This year, we in fact had 19 places, due to a few deferred places from last year! On the day, 18 runners completed the London Marathon under one of our official places and three runners completed the London Marathon for us under their ballot place.

The London Marathon 2019 was a big one and broke many records, including new Guinness World Records, the total number of London Marathon finishers and the incredible news that the London Marathon has now generated over a billion pounds for charity, since the race’s inception! Our team of runners have been busy fundraising over the past year in the build-up to the marathon, which will help us support more and more families and patients with Inherited Metabolic Disorders.

This year, we had a few familiar faces running the London Marathon for Metabolic Support UK, including Steve, who ran his fifth London Marathon for us just two days after his sixtieth birthday! Then we also had many new faces in Team Metabolic, including a team of three from Plymouth (Mike, Sean and Ty), a team of four from South Wales (Adrian, Ross, Chris and Tom), a team of two from Gloucestershire (Laura and Kate), and a couple from Liverpool (Dean and Becky) and Preston (Joanne and Ashley)! We’ve loved seeing our marathon runners complete their training together and keeping each other motivated up until the marathon itself!

Our fastest runner on the day was Jessica at 3 hours and 23 minutes, who ran under her own ballot place in honour of her sister and to raise awareness of Krabbe’s Leukodystrophy. Our next fastest runner, Adrian, ran under one of our places and was running to raise awareness of his daughter’s condition of Alexander’s Disease. He completed the marathon in 3 hours and 29 minutes!

However, regardless of run times, all our runners have completely inspired and overwhelmed us with pride, and we are so thankful to each runner, who chose to run the London Marathon to support patients and families living with Inherited Metabolic Disorders.

Thank you so much to Leanda, Phil, Steve, Emily, Iain, Matt, Ross, Chris, Adrian, Tom, Laura, Kate, Sean, Mike, Ty, Ashley, Joanne, Dean, Becky, Stuart and Jessica for helping us raise awareness of Inherited Metabolic Disorders and showing so much support for Metabolic Support UK with your fundraising and awareness raising. Your support is invaluable. Here we’d like to share some photos of the amazing Team Metabolic 2019 at this year’s London Marathon, as well as some words from Mike, one of our incredible runners:

“London Marathon, thanks a billion! The build-up was filled with nerves and excitement, shared by friends, supporters and fellow runners. Then the time had come. We got into our red zone and were excited to get going. The race began and the crowds screamed our names, as I eased into a nice pace. As Cutty Sark approached, a wall of noise hit as well as amazing support from all sides. Then my legs started to get heavy and I had to work really hard to hit the paces I had planned. It had never felt like this in training but I said to myself that I had to keep on going and enjoy the atmosphere. Tower Bridge was amazing and by far the loudest part of the course, and we had now gone over half way. Mile 15 approached and by this point, my race for sub 4 hours was finished – my legs were cramping and my pace slowed. At Mile 16, I adopted a run/walk approach to get through and decided to really soak up the atmosphere and enjoy the best marathon in the world. Those final miles were both the best and worst throughout the course: the best support and knowing my family were waiting near the end kept me driving on, whilst my legs were screaming to stop. As we turned the last corner, a sign saying “385 metres to go” appeared. I got emotional and knew I would finish. I lapped up the applause, people cheering me on and with a final push, I crossed the line; fist pumped the air; and breathed a sigh of satisfaction. I collected my medal and proceeded to meet family and fellow runners.

Overall, the London Marathon stole my heart. It was my fifth marathon and by far the best. Running for Team Metabolic and raising valuable money for such a great cause added to the experience. London and I have unfinished business, and at some stage, I will return. After all, it’s the best marathon in the world.”

**Ty, Mike and Sean – Team Metabolic’s Plymouth Team! (pictured left to right)**

**Laura and Kate – Team Metabolic’s Gloucestershire Team! (pictured left to right)**

**Matt, running to raise awareness of Ornithine Transcarbamylase Deficiency (OTC)**

**Becky and Dean – Team Metabolic’s Liverpool Team!**

**Ashley – half of Team Metabolic’s Preston team!**

**Joanne – half of Team Metabolic’s Preston team!**

**Stuart, helping raise awareness of MCADD**

**Emily, running the marathon for one very special young man, Louis**

If our fantastic runners have inspired you to take on the London Marathon 2020 for Metabolic Support UK, you can register for one of our places here: https://www.metabolicsupportuk.org/london-marathon/

Meet the Ambassador: Chris Leaney!

Posted on April 26, 2019April 26, 2019 by Maggie Allan

In November, we launched our Community Ambassador programme. We recruited 8 amazing Ambassadors, who are supporting the Inherited Metabolic Disorders community in their local areas, enabling us to reach many more patients and families. They are also helping us spread the word by raising awareness and fundraising.

In this blog post, we’d like you to meet our Ambassador, Chris Leaney!

Why did you want to become a Metabolic Support UK Community Ambassador?

I have Phenylketonuria (PKU) and had heard of the great work the team do for people with this condition and others.

How are you planning to raise awareness about the services Metabolic Support UK provide?

By using contacts I’ve made over the years in TV, radio and YouTube, to put on a large event each year.

Where is the strangest place you have raised awareness about Inherited Metabolic Disorders?

A small food festival in West Wales in August 2018, where I talked about living with PKU.

**Chris at the Food Festival in West Wales**

What’s the hardest thing about living, or living with someone, with an Inherited Metabolic Disorder?

Lack of understanding of the condition you have and constantly explaining all about it.

In the IMD community, who has had the greatest impact upon you?

Professor Heinz Wolff was my first PKU consultant at Great Ormond Street when I was born. He and Dr Mike Champion at Guys & St Thomas’ Hospital guided me.

What’s in your fridge?

A lot of vegetarian products and packs of Actimel.

Favourite comfort food?

As a child with PKU, potato was always my favourite food. As I am older, I love rice pudding – my go-to food!

Strictly Come Dancing, I’m a Celebrity, or Great British Bake Off?

This year, it was definitely Strictly, as a person I’ve worked with was on it.

What was the last film you watched?

It was Bohemian Rhapsody at the cinema, with the fantastic Rami Malek.

Caribbean beach or snow top mountains?

I’m a gold medal skier. So, I’ll go with a snow-covered mountain tops. Although, I do love St Lucia.

What would be a good theme song for your life?

“Let Me Entertain You” by Robbie Williams. At school, I was always the joker and I now love putting on big charity events, to entertain people.

Who do you follow on Twitter?

I follow sportsmen and women, actors and actresses, a lot of musicians and TV personalities I have worked with for other charities, and many YouTubers.

If you were given an extra hour today, how would you spend it?

With my son; he is my greatest achievement and I love being around him.

We look forward to hearing what events Chris organises in his new Ambassador role and thank you so much to Chris for helping us raise awareness of Inherited Metabolic Disorders. Your support is hugely appreciated.

If you live with PKU and would like to connect with Chris, please get in touch with Team Metabolic’s Julie on julie@metabolicsupportuk.org

If Chris has inspired you to become a Metabolic Support UK Community Ambassador, please contact Julie on julie@metabolicsupportuk.org or visit https://www.metabolicsupportuk.org/ambassador/

Easter Guest Post: Lemon Cake Pops

Posted on April 19, 2019April 25, 2019 by Maggie Allan

We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.

It’s Easter time and we are delighted to team up with Metabolic Support UK once again to share the latest news from Nutricia HQ and to inspire you with our delicious low protein recipes that you can try at home.

To bring some brightness and colour to the kitchen, we’re making some low protein Lemon Cake Pops. Check out on our website Low Protein Connect for more great low protein meal ideas. We really hope you enjoy.

Best regards,

Amy at Nutricia Metabolics

Recipe of the Month:

Lemon Cake Pops

Please click on the image to see the recipe!

You can keep up-to-date with Nutricia Metabolics on social media too!

Facebook: Low Protein Connect

Instagram: @lowproconnect

Twitter: @lowproconnect

YouTube: LowProteinConnect

Is there a topic that you would like to read about? Or maybe you have an idea for our Recipe of the Month? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

Launching the Newborn Screening App

Posted on April 12, 2019 by Maggie Allan

Recently, Metabolic Support UK launched a newborn screening app, which aims to give information on the six Inherited Metabolic Disorders tested via the heel prick test. The newborn screening app is there to reduce anxieties amongst parents, by giving new parents more information on their diagnosis and to show the support Metabolic Support UK can offer.

Over the past few months, the Core Services team have been busy promoting the app to healthcare professionals, to ensure parents can be made aware of this app, to help ease some of their worries upon their diagnosis.

January to April have been a busy few months for the Metabolic Support UK team, from engaging with hundreds of new patients to getting out and about and attending meetings and events. In February, Jess (our Core Services Manager), Helen (our Information Standards Officer), and parent speaker, Kate Jenkins, attended the London Midwives and Maternity Festival in Kensington, to launch the newborn screening app.

**Team Metabolic’s Jess at the London Midwives and Maternity Festival**

The event took place on 5^th February and was a great opportunity for us to promote the work we do; raise awareness about Inherited Metabolic Disorders; and launch the newborn screening app. We were also invited as guest speakers and did a presentation to a room full of midwives, which was also live-streamed. The event was well attended, with 700 midwives there on the day and 1,200 joining via live-stream. It was a fantastic opportunity for us to raise awareness about Inherited Metabolic Disorders and to talk to midwives from around the UK about the work we do and our brand-new newborn screening app ‘Inherited Metabolic Disorders: A Guide for Parents of a Child Detected by Screening’. Our app received a positive response from midwives, who were keen to share it with new parents following the heel prick test.

Our app has been designed by students at Coventry University, Professor Jim Bonham, Professor Louise Moody and Metabolic Support UK, to reduce anxieties and provide factual and accurate information to parents following the heel prick test. It has clear infographics explaining each condition, patient videos and a glossary. New parents can download the app to read about their child’s condition and what to expect next. The app can also be shared with friends and family to further explain the condition and emphasise the importance of following strict treatment protocols.

Most recently, Team Metabolic demonstrated the app at the Nutrica DMIMD event in London to dieticians and metabolic specialists from all over the world. Once again, the app received a positive response and attendees were given the opportunity to download it using a QR code. We were also able to give an update about all the services we provide and share some details about some of our upcoming projects. Keep an eye on our website and social media feeds for updates over the next few months!

**Team Metabolic’s Jess at the DMIMD Conference**

We hope the app will prove a good support to all new parents whose children receive a positive diagnosis following the heel prick test. We are also keen for the app to be reviewed by parents who have already gone through this process, who can give us feedback on its design and functionality.

We have many more planned opportunities within the next 12 months to promote the app further and we look forward to receiving reviews and developing it in the future.

For further information about the app and to download it, please visit the following page: https://www.metabolicsupportuk.org/newborn-screening-app/. If you have any other questions about the app, please email Jess on jess@metabolicsupportuk.org

A Volunteer becomes a Local Hero

Posted on April 5, 2019 by Maggie Allan

Over the past year, Team Metabolic has gone through a lot of changes. We have doubled our staff; started new projects; and all under a new name! Part of those changes has been to form a close link with the University of Chester, where we have been able to recruit interns and volunteers, to support the services we provide to our Inherited Metabolic Disorders community. Recently, one of our wonderful volunteers, Sue, also did some fundraising for us.

**Helen Morris, Team Metabolic’s Information Standards Officer, with volunteer Sue Jones (pictured left to right)**

Sue Jones is a University of Chester student and an employee at Sainsbury’s Upton Wirral and gave up her spare time to volunteer with Team Metabolic at their office in Chester!

The University of Chester works closely with local charities and organisations, to provide students with hundreds of different opportunities around Chester. And this year, Metabolic Support UK were able to advertise some volunteering roles on the University of Chester’s volunteering portal, which is how the lovely Sue came to join Team Metabolic! Sue works with the Information Standards team and is helping ensure Team Metabolic provide our community with the most up-to-date information on the diagnosis methods and treatments of all the Inherited Metabolic Disorders.

As part of the University of Chester’s volunteering scheme, students can record their volunteering hours and apply for an award in recognition of their volunteering commitments and achievements.

Sainsbury’s also has a volunteering scheme called the Local Hero Award, which encourages colleagues to volunteer with a charity or within the community. For every hour spent volunteering, Sainsbury’s agrees to donate £5 per hour of volunteering to the charity or community group at which the Sainsbury’s employee volunteers, up to a maximum of £200 each year.

Sue has been a volunteer at Metabolic Support UK since August 2018 and has now logged over 80 hours of volunteering, meaning she was able to apply for the Local Hero Award. Since then, Sainsbury’s have agreed to donate £200 to Metabolic Support UK!

In response to receiving this award, Sue said, “I applied for the role of Research and Administrative Volunteer as I thought it would fit in well with my Nutrition and Dietetics degree. I have learnt a lot about the different metabolic conditions and I’ve really enjoyed working with the team at Metabolic Support UK. They’re all lovely and I have been given many opportunities to develop my skills and improve my employability. I was delighted for them to get the £200 award for my volunteering.”

Thank you so much to Sue for all your hard work at Metabolic Support UK! Your support to the Information Standards team is invaluable and your initiative to apply for the Local Hero Award is hugely appreciated. The donation will allow us to continue to support more and more families and patients with Inherited Metabolic Disorders.

If Sue has inspired you to fundraise, please visit https://www.metabolicsupportuk.org/fundraise-for-us/

If you’d like to volunteer with Metabolic Support UK and to provide vital support to the Inherited Metabolic Disorders community, please email Jess on jess@metabolicsupportuk.org

Meet the London Marathon Runner: Laura Curtis!

Posted on March 29, 2019March 21, 2019 by Maggie Allan

On Sunday 28th April, 19 supporters of Metabolic Support UK will be taking to the streets of London for the London Marathon! We are always in awe of our incredible marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!

In this blog series, we want you to meet some of the amazing Team Metabolic 2019 and find out how they’re preparing for the big day! Next in this series of blog posts, we’d like to introduce you to Laura and for you to hear about her motivations to run the London Marathon!

“There’s no doubt, I was born to be a runner. I enjoy it. I like the thrill of getting out with the dogs in the crisp winter air, feeling invigorated as I pilot new running routes around the Cotswolds. The only thing, which really frustrates me, is when my Garmin has no signal, causing me to jump frantically up and down like a frog on a lily pad, so I don’t lose momentum. Yes, admittedly, I am now one of those people, who I used to look at and despise. This was usually from the confines of a pub, watching the vibrant streak of lyrca whizz pass the window

“Why would you do that on a Friday night?!” I would say to my friends.

Now, I am THAT person looking enviously in while you sip your G&T. Those days are long gone. For now, anyhow!

And amblers! Don’t get me started on amblers! They seriously get in the way. Those 5 km (3.1 miles) and even 10 km runs (6.2 miles) are basically like a walk in the park for me. But no one can prepare me for a 26.2 mile slog. Oh, did I mention my legs really hurt?

I attempted a 15 mile run last week – a personal target, which I achieved. The next step is building on that and finding interesting routes to do it. Running into Cheltenham (as I did on Saturday) is depressingly nowhere near long enough. This led to a very frustrating run up and down lanes, to try and hit the target “beep” from the Garmin. Between organising different fundraisers, like our Valentine’s Charity Run the other weekend, I’m getting in some longer runs and I’ve excitingly got some new running patterns to try!”

We hope your training continues to go well, Laura!

To support Laura on their London Marathon journey, you can donate to the following page: https://uk.virginmoneygiving.com/lauracurtis9

Meet the London Marathon Runner: Chris Ingram!

Posted on March 22, 2019March 21, 2019 by Maggie Allan

On Sunday 28^th April, 19 supporters of Metabolic Support UK will be taking to the streets of London for the London Marathon! We are always in awe of our incredible marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!

Hi Chris, thank you for taking the time to tell us a bit about your 2019 London Marathon experience so far! How’s your training for the marathon going? Do you have a training plan?

Training is going well. I’m currently getting out about five times a week and running around 50 miles. I’m also going to look to start breaking training up with hill and mountain running and interval fartlek.

Have you run any marathons before?

I haven’t run a full marathon before but have run a few half marathon trail runs, which has served as a good starting base for my training for the London Marathon.

Why did you want to run the London Marathon?

I am running the London Marathon to raise money for my friend’s brave little girl, Emilia, who has a really rare condition called Alexander’s Disease. I am fundraising to raise awareness and help fund research into this terrible disease.

Why did you want to run the London Marathon for Metabolic Support UK?

Adrian, Emilia’s dad, helped me get the place and I am extremely grateful to Metabolic Support UK for giving me a place.

Do you have a favourite running route?

I try and mix up my running routines between road and mountain running. I try to change up my routes on a regular basis to add variety and challenge my body further.

Do you have a running playlist?

I don’t have a running playlist. I just like to switch off; get in the zone; and plough through the miles.

What’s your favourite post-run meal or snack?

I don’t normally eat for a while post-run. However, I love Chinese food and I am quite partial to a few bottles of Budweiser, haha!

We hope your training continues to go well Chris!

To help support Chris on their London Marathon journey, you can donate to their fundraising page on the following link: https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=chris-ingram-SAVMLMBONDS3332019-151393&pageUrl=1

Kate and Laura’s Valentine’s Fun Run!

Posted on March 15, 2019March 14, 2019 by Maggie Allan

**Laura and Kate at the Valentine’s Fun Run!**

At Metabolic Support UK, we have a number of London Marathon places to offer our supporters each year. In return for a marathon place, our runners agree to fundraise for us! Our London Marathon runners have done so many different fundraisers over the years and this year, our London Marathon runners, Laura and Kate, decided to organise a Valentine’s Fun Run in support of Metabolic Support UK!

Here, Laura explains what their Valentine’s Fun Run was and how it went on the day!

Hi Laura, thanks for taking the time to chat to us about your Valentine’s Fun Run! What exactly was it?

The Valentine’s Fun Run was a charity run, which Kate and I held in Winchcombe, to raise money for Metabolic Support UK. We predominantly focused on our local running club for interest, although word did spread and we had a really decent turnout on the day.

Where did your Valentine’s Fun Run take place?

We held it in a fairly central location in Winchcombe. We chose that area as we were aware that many people would be driving. Plus, we wanted the run to be mostly off-road. The start and finish point were the same, which made our lives so much easier. The run was a loop around the historic Sudeley Castle – a distance of about 5 miles.

Who took part in your Valentine’s Fun Run?

The majority of the entrants were from our club: Winchcombe Running Club. However, as the word spread, we had a few local ladies turn up and run, as well as some family and friends and dogs too, of course!

Kate and I also roped our parents into being the marshals, which they secretly enjoyed! One of our marshals even brought a chair and refreshments!

How did the event go?

So well! We were quite nervous in the lead up to the race in terms of the organisation, marking the route and whether we would actually get enough people. On the day, we had a really good turnout. People we hadn’t expected to run, registered and paid on the day!

The feedback we received was very positive. The runners loved the route Kate and I had marked out and the ‘‘goody bags” were an extra bonus!

**The Valentine’s Fun Run runners and their “goody bags”!**

What other fundraisers have you got organised as part of your London Marathon fundraising plan?

We are thinking of doing a drinks/food evening where people can come and have a fun evening whilst raising money for Metabolic Support UK.

We’re really glad your event was such a success and that you had lots of support on the day! We can’t wait to hear what other fundraising events you plan!

If Laura and Kate have inspired you to organise your own fundraiser, please get in touch with Team Metabolic’s Marketing and Fundraising Officer, Maggie, on margaret@metabolicsupportuk.org or 0845 241 2173.

To support Laura on their London Marathon journey, you can donate to the following page: https://uk.virginmoneygiving.com/lauracurtis9

To support Kate on their London Marathon journey, you can donate to the following page: https://uk.virginmoneygiving.com/KateMcElroy1

Meet the Marathon Runner: Ross Fitzpatrick!

Posted on March 8, 2019March 7, 2019 by Maggie Allan

Hi Ross, thank you for taking the time to tell us a bit about your 2019 London Marathon experience so far! How’s your training for the marathon going? Do you have a training plan?

My training is going well! I completed an ultra (35 mile) in November. So, I took it easy in December. I then had a half marathon in February and started training a bit smarter after Christmas for that. Then I’ve got a marathon this month and I should be good for that. If all goes well, I should be in peak condition for London! My plan consists of two day hill repeats, two day fartlek training, one day HIIT and a long run on Sunday.

Have you run any marathons before?

Yes, I try to run three to four events a year, ranging from half marathons to ultra marathons.

Why did you want to run the London Marathon?

I grew up watching the London Marathon with my mother and father. It is so prestigious and when I started running in competitive races, my aim was to always try and run London for charity.

Why did you want to run the London Marathon for Metabolic Support UK?

The daughter of one of my best friends is living with Alexander’s Disease. I’ve worked with children with physical and mental health issues for the past 13 years and I jump at the chance to try and raise money, to help young people live to their full potential.

Do you have a favourite running route?

I love running on the mountains of my home valley in the Rhondda, South Wales.

Do you have a running playlist?

When I’m training for a long run, I tend not to listen to music, as I don’t during races. But if I’m running shorter routes, I’ll listen to some upbeat music from some of my favourite bands like Oasis, Black Grape, Prodigy and the Sex Pistols – it keeps me going and gives me a buzz!

What’s your favourite post-run meal or snack?

After a long run, you burn so many calories (up to 5,000). So, I just want stodge!! So, burgers, Chinese or pizza followed by a few lagers hit the spot!

We hope your training continues to go well Ross!

To help support Ross on their London Marathon journey, you can donate to their fundraising page on the following link: https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=RossFitzpatrick&pageUrl=1

Pancake Day Guest Post: Nutricia Metabolics

Posted on March 1, 2019 by Maggie Allan

We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.

Pancake Day – one of my favourite days of the year. Our pancake recipes have been a big hit on our website, Low Protein Connect, since they were launched.

My favourite topping is always fruit (I love apples and bananas), a drizzle of honey or maple syrup and a sprinkle of cinnamon. What’s your favourite pancake topping? Share it with us on social media!

Best regards,

Amy at Nutricia Metabolics

Recipes of the Month:

Low Protein Pancakes with Mixed Berries:

Please click on the image to see the recipe!

Three-Exchange Oat Pancakes:

Please click on the image to see the recipe!

You can keep up-to-date with Nutricia Metabolics on social media too!

Facebook: Low Protein Connect

Instagram: @lowproconnect

Twitter: @lowproconnect

YouTube: LowProteinConnect

Is there a topic that you would like to read about? Or maybe you have an idea for our Recipe of the Month? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

Meet the Marathon Runner: Sean Barrie-Rafton!

Posted on February 22, 2019February 21, 2019 by Maggie Allan

1. Hi Sean, thank you for taking the time to tell us a bit about your 2019 London Marathon experience so far! How’s your training for the London Marathon going? Do you have a training plan?

I’m following an 18-week training plan, which will take me up to around two weeks before the marathon. This involves running four times a week, running three 4-mile runs and a longer run, which is now at half marathon stage! I’m now on week 6 of training. If I’m still feeling good after my training runs, I take my dog Harley out and he runs the last kilometre or two with me, with toilet stops on the way!

**Harley, Sean’s trusty running companion!**

2. Have you run any marathons before?

This will be my third marathon, my first being in Liverpool in 2017 and my second in Newport in 2018. I’ve also run several 10ks and half marathons.

3. Why did you want to run the London Marathon?

Running the London Marathon has always been a dream for me and as this will probably be my last one, I want to finish on a high!

4. Why did you want to run the London Marathon for Metabolic Support UK?

I have run several races for charity, and they have always either been the major ones or local ones to myself. So, this time, I wanted to help a charity that people may not have heard of and bring their awareness to it. I managed to raise over £1,500 for Metabolic Support UK in little over 11 weeks and am very passionate about it!

5. Do have a favourite running route?

I have several running routes in Plymouth and the surrounding areas. I like to run in scenic places with less traffic, as I find it more enjoyable. I particularly like Saltram and Burrator Resevoir and will drive to an area and run from there. I really enjoy running with my friends too.

6. Do you have a running playlist?

I always listen to music when I’m running on my own and my playlist is anything from Elvis, The Beatles, Rolling Stones to more modern tracks – anything I find uplifting and motivating.

7. What’s your favourite post-run meal or snack?

My post run snack is usually junk food of mainly crisps and sweets, as I’m sure I’m still burning those calories!!

We hope your training continues to go well Sean!

To help support Sean on their London Marathon journey, you can donate to their fundraising page on the following link: https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=seanbarrierafton&pageUrl=2

A Little Night of Music for Anna

Posted on February 15, 2019February 14, 2019 by Maggie Allan

On Saturday 19^th January, the Keighley family brought friends, family and their local community together to fundraise for Metabolic Support UK and to celebrate the life of Anna, their daughter, who very sadly died of GM1 Gangliosidosis, aged 1. They organised a classical concert music, which proved to be a huge success, as Sarah, Anna’s Mum, explains.

“On 14^th July 1997, our daughter, Anna, was born. When she was only 3 months old, she was diagnosed with GM1 Gangliosidosis, a rare metabolic disease. At the time of diagnosis, we were told that this was incurable, and that Anna was unlikely to live beyond the age of 2. The course of the disease meant that Anna would lose the few developmental skills she had already attained; become quadriplegic; go deaf and blind; have fits and recurrent chest infections, to which she would eventually succumb.

With a bit of research, we came across Metabolic Support UK, who were there to support our family and give us a wealth of information on GM1. It was reassuring to speak to someone who knew instantly about the disease when everyone else we had spoken to seemed to know so very little.

We were initially devastated by the news that Anna was terminally ill but over the next few months, Anna’s condition and prognosis was something with which we came to terms. Although the changes were slow at first, Anna’s condition deteriorated noticeably after her first birthday. All the way through, it was our desire to nurse Anna at home, and we were supported to do this by all those involved in her care. In the middle of November 1998, Anna became unwell with a chest infection following several weeks of noticeable deterioration and sadly she died in our arms on 27th November 1998.

As the 20th anniversary has recently passed, we wanted, as a family, to celebrate her short life and raise money for Metabolic Support UK. We had the idea of hosting a concert at St Chads Church in Poulton-le-Fylde, Lancashire, entitled ‘Classical Mix.’ Our son, Matthew, who is a performance Masters student at The Royal College of Music in London and sings tenor, put the programme together along with his girlfriend, Hannah Johnstone, alto and post-graduate student at Trinity Laban Conservatoire in London. They were joined by friends, Lizzy Humphries (soprano), who sings regularly on Radio 3 & 4 and Theo Perry (baritone), also a post- graduate student at Trinity Laban. The programme consisted of solo and ensemble pieces from composers including Elgar, Parry, Mozart, Schubert and others.

With tickets only sold on the door and not in advance, we didn’t know how many people to expect. The concert started at 7pm, and by 6:30pm I was worried that there wouldn’t be enough people for our vocalists to perform to. But by 6:45pm they were queuing down the church path! We were overwhelmed by the turnout, with a full church including the balcony. It was an amazing response.

The concert was a rip-roaring success both from the turnout and from the feedback given on the night and since the concert. With family and friends spread far and wide, we knew not all would be able to come. So, alongside the concert, we also ran a Just Giving page to provide an opportunity for some of them to contribute. This was a brilliant idea! We raised £660 through our Just Giving page alone! With the money raised on the night and other donations received, we have raised a staggering £3,018.22! As a family, we couldn’t be prouder of this achievement and all for a cause so close to our hearts.

The Keighley family.”

Thank you so much for all your support. Your donations will make a huge difference to the support we can give to families and patients with Inherited Metabolic Disorders.

We are also delighted that your event was such a success. It sounds like it was a truly beautiful tribute to Anna.

If the Keighley family have inspired you to fundraise, please get in touch with Maggie, our Marketing and Fundraising Officer, on margaret@metabolicsupportuk.org or 0845 241 2173 for some fundraising inspiration and to see how we can support you with your event.

February Guest Post: Nutricia Metabolics

Posted on February 8, 2019February 8, 2019 by Maggie Allan

We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.

February – the beginning of spring and the month of Valentine’s Day. These pretty, low protein Red Velvet cupcakes are a perfect treat to celebrate a day dedicated to love. Don’t forget to share your low protein creations with us on social media.

Best regards,

Amy at Nutricia Metabolics

Recipes of the Month:

Red Velvet Cupcakes

Please click on the image to see the recipe.

You can keep up-to-date with Nutricia Metabolics on social media too!

Facebook: Low Protein Connect

Instagram: @lowproconnect

Twitter: @lowproconnect

YouTube: LowProteinConnect

Is there a topic that you would like to read about? Or maybe you have an idea for our Recipe of the Month? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

Meet the London Marathon Runner: Kate McElroy!

Posted on February 1, 2019February 1, 2019 by Maggie Allan

1. Hi Kate, thank you for taking the time to tell us a bit about your 2019 London Marathon experience so far! How’s your training for the marathon going? Do you have a training plan?

Training is going well. I have created a plan based on the British Heart Foundation’s plan for intermediate runners. This includes two regular weekly 5 mile runs, one weights or toning session, and one long run at the weekend. I was already running every Monday with my local running club in Winchcombe and every Wednesday with a club in Cheltenham but the plan means I have to stick to it a bit more religiously! I am already up to half marathon distance and now need to up the mileage on the long runs. Luckily, I am training with a friend. So, we are encouraging each other. She is also running for Metabolic Support UK. So, we are organising fundraising events together as well as training. The first event will be a Valentine’s themed run in February.

2. Have you run any marathons before?

I have never run further than a half marathon. So, this will be a real challenge!

3.Why did you want to run the London Marathon?

In April 2016, I joined my local running club as a total novice. It had been a pretty turbulent time in my personal life. I was living in a new place; had a new job; and was trying to start a new life. When I was viewing my cottage, the estate agent suggested I join the local running club as a good way of meeting new people. To begin with, I laughed at her! But I did end up joining Winchcombe Running Club and its founder, Lindsay, coached me from run/walking for 15 minutes in my first week to my first 10k race a few months later.

I have made some wonderful friends and running is now a big part of my life. So, it’s time for the ultimate challenge – a marathon! And what better marathon to run than London.

4. Why did you want to run the London Marathon for Metabolic Support UK?

A few of my fellow running club members ran the London Marathon in 2017 for Metabolic Support UK and I went along to a few of their fundraising events, including a bingo evening and a dinner and drinks evening in a wooden lodge. Through these events, I learned more about the wonderful work Team Metabolic do and was encouraged to try for a place in this year’s marathon. And here I am!

5. Do you have a favourite running route?

I am lucky enough to live in a beautiful part of the Cotswolds. So, the routes we run are very pretty, if a little hilly! My favourite route is between two small Cotswold villages: Stanway and Stanton. It’s relatively flat but I have to stop myself from taking breaks to take pictures en route! Another favourite is a route from the centre of Winchcombe up to Cleeve Hill and back again. You can see Cheltenham racecourse from the hill. The route is up hill all the way but it’s nice to know the second half is all downhill.

6. Do you have a running playlist?

I almost always run with friends. So, we just chat the whole time! If ever I do go out alone, I listen to podcasts. Current favourites are “The High Low” and “How to Fail with Elizabeth Day”.

7. What’s your favourite post-run meal or snack?

I’m not usually hungry immediately after a run but have recently read that you need to eat something within 20 minutes, to feed your muscles and reduce aching. So, I whip up a smoothie made of frozen banana, almond milk, peanut butter and coffee, before I leave. So, I can have it as soon as I am home – it’s delicious! The best part of training is the carb heavy meal the night before a long run. I love slow cooked ragu with fettuccine – and maybe some chocolate for afters!

We hope your training continues to go well Kate!

To support Kate on their London Marathon journey, you can donate to their fundraising page on the following link: https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=KateMcElroy1&pageUrl=2

Meet the London Marathon Runner: Mike Allen!

Posted on January 25, 2019January 25, 2019 by Maggie Allan

On Sunday 28^th April, 19 supporters of Metabolic Support UK will be taking to the streets of London for the London Marathon! We are always in awe of our incredible London Marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!

In this blog series, we want you to meet some of the amazing Team Metabolic 2019 and find out how they’re preparing for the big day! First in this series of blog posts, we’d like to introduce you to Mike!

Hi Mike, thank you for taking the time to tell us a bit about your 2019 London Marathon experience so far! How’s your training for the London Marathon going? Do you have a training plan?

Training’s going really well at present. I’m currently hitting around 30-35 miles per week, which is spread across 4-5 runs. I’m following a marathon plan I have used before from an experienced running coach. It works better for me to follow a plan, as I respond better both physically and mentally, knowing that I have a structure in place. In the next month, those miles start increasing and having a plan in place allows me to run hard but recover just as quick too.

Have you run any marathons before?

Yes, I have run 4 marathons before. My first was in 2015 and was a struggle to the extent I believed I would never run another. Then a good friend asked me to run one with him in 2017 (Liverpool Rock ‘n Roll) and I fell back in love with marathon running. Since then, I have run two marathons (Newport South Wales and Barnstaple, Devon) – one being last year. I have London and Amsterdam booked for this year too!

Why did you want to run the London Marathon?

It’s the world’s biggest marathon, in our home country and one of the world majors. It ticks all the boxes for marathon runners. Watching it on TV for many years and seeing the support you get gives me goose bumps thinking about it.

Why did you want to run the London Marathon for Metabolic Support UK?

A friend of mine knew I wanted to run London and that I was unsuccessful in the ballot. He ran the London Marathon for Metabolic Support UK in 2018 and was amazed at how little was known of the charity in the South West of the UK. He then went on to explain the variety of support networks and good things that come as a result of the work Metabolic Support UK do and this gave me the drive to support such a good cause.

Do you have a favourite running route?

I have several, depending on the length of the run. I love hitting some trails and hills. So, on my longer runs I tend to use what I call a parkrun sandwich to get the miles in. I run from my house for anywhere between 10k-16k on an undulating road route; I arrive at parkrun where I pick up the pace and use it as a session during a long run; and then I run home, to get the miles in.

Do you have a running playlist?

I have several playlists depending on the type of run I’m doing. For easy miles, I tend to use some easier music, such as 80’s music. Then on my faster or hillier sessions, I tend to have some dance music on – something with a higher beats per minute. However, to raise some money, I have offered friends and family the chance to create a playlist for me, which I shall use on my longer runs. For a small donation, they get to choose a song to add to the playlist. So far, it’s been great fun – some of the songs I’d never heard before!!

What’s your favourite post-run meal or snack?

I have a few go-to meals after long runs. For example, spaghetti bolognese or a chilli hit the spot. For snacks, it’s something light like bananas or protein shakes.

We hope your training continues to go well Mike!

To help support Mike on their London Marathon journey, you can donate to their fundraising page on the following link: https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=MikeAllen16&pageUrl=1

January Guest Post: Nutricia Metabolics

Posted on January 16, 2019 by Maggie Allan

We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.

Happy New Year from all at Nutricia HQ.

Have you made any resolutions, plans or commitments for 2019? If you’re aspiring to cook more, our recipe of the month is just for you! A delicious warming soup that can be made more substantial by adding some low protein pasta. This is just a selection of the recipes that you can find on www.lowproteinconnect.com. Don’t forget to share your low protein creations with us on social media!

We wish you the very best for 2019.

Best regards,

Amy at Nutricia Metabolics

Recipes of the Month:

Roasted Red Pepper and Tomato Soup:

Please click on the image to see the recipe.

You can keep up-to-date with Nutricia Metabolics on social media too!

Facebook: Low Protein Connect

Instagram: @lowproconnect

Twitter: @lowproconnect

YouTube: LowProteinConnect

Is there a topic that you would like to read about? Or maybe you have an idea for our Recipe of the Month? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

New Year’s Resolutions to Support Metabolic Support UK

Posted on January 2, 2019December 21, 2018 by Maggie Allan

Christmas and the New Year are over and life is starting to get back to normal. Over the festive season, you may have come up with a few New Year’s resolutions. We have a few of our own and some suggestions for you, if you’re looking for more ways to support Metabolic Support UK this year!

1. Fundraising

Whether you’re new to fundraising or not, there’s never a bad time to do some fundraising! Donations we receive through fundraising are essential to us and help us support patients and families worldwide, through raising awareness, our support line and hosting Patient Days and Conferences.

To kick-start your fundraising for the year, make yourself some fundraising targets for 2019 – this could be how many fundraisers you want to hold or how much money you want to raise! Setting your targets at the beginning of the year will help keep you focussed on what you want to achieve in 2019.

2. Raise Awareness

With Inherited Metabolic Disorders being rare conditions, raising awareness about these disorders is key. As a small team of 11, we need your support to raise awareness. To help us with our mission, you can distribute leaflets in your local area or host a Metabolic Support UK stand at your local fair. We can provide you with all the materials to support this too.

3. Become an Ambassador

This year, we launched our Ambassador programme and now have 10 Ambassadors supporting us through fundraising and raising awareness of IMDs in their locality! At Metabolic Support UK HQ, we have a designated Ambassador Co-ordinator, who will support you with your Ambassador tasks. The Ambassador role is designed to fit around your busy lifestyle and commitments as well. For more information on becoming an Ambassador, please see the following link: https://www.metabolicsupportuk.org/ambassador/

4. Get Fit

This is one of the most common New Year’s resolutions; and one we can help with! We still have places for RideLondon 2019, for which you can register on the following link: https://www.metabolicsupportuk.org/ride-london/ And we will be releasing places for the 2020 London Marathon next May! So, you could make it your mission to complete or train for one of these iconic races in 2019! If you would prefer to do a race in your locality, we can also support you with this, with fundraising materials and one of our snazzy cycling or running vests!

Credit: Pixabay.com

5. Develop a Hobby

Having a hobby can be good for our emotional wellbeing, as it can force us to make more time for ourselves and to do something we love! With craft-based hobbies, you can even turn your passion into a business and sell your goods at local fairs, or to friends and families, with the potential of giving a percentage of the profits to Metabolic Support UK!

6. Donate once a Month

If you’ve been reviewing your finances and have decided you’d like to, and can, donate to Metabolic Support UK each month, you can do so by signing up to our Friendship Scheme on the following link: https://www.metabolicsupportuk.org/becomeafriend/ Or you can set up a monthly direct debit to us on the following link: https://www.metabolicsupportuk.org/donate/

7. Start New Traditions

Yearly or monthly traditions always make a nice addition to the year – whether that’s a friend meet-up, weekend trip away or a religious festival. Why not create a new tradition this year, which could also support Metabolic Support UK? This could be a family fun day over the summer or a winter-themed dinner party for friends and family!

8. Make New Friends

Family and friends are essential to keeping us stable and happy, especially with the challenges that life with a rare condition can bring. Make new connections this year through our peer-support programme, Metabolic Connect, which you can join on the following link: https://www.metabolicsupportuk.org/metabolic-connect/ Or attend one of our Patient Days or Conferences, to meet other families, patients and professionals, who know exactly what you’re going through.

There are many ways you can get more involved with Metabolic Support UK this year and your support is always hugely appreciated. With your help, we can reach out to more patients and families with Inherited Metabolic Disorders and develop projects that will support our IMD community as best as possible.

For fundraising support, please contact Maggie on margaret@metabolicsupportuk.org

For more information on our Ambassador programme, please contact Julie on julie@metabolicsupportuk.org

For emotional support, please contact our Family Support Officer, Rachel, on rachel@metabolicsupportuk.org

Goodbye 2018 – Metabolic Support UK’s Year

Posted on December 21, 2018December 21, 2018 by Maggie Allan

It’s been quite a year for the Metabolic Support UK team! Many changes have been made but most importantly, we have been able to reach more and more patients and families this year with a new more inclusive name; a larger team to travel across the UK to meet patients and families; and an incredibly supportive pool of fundraisers, who have enabled all these positive changes to happen.

We’re very proud of all we’ve managed to achieve for our IMD community this year and here you can see some of what Team Metabolic has achieved in 2018!

New Name, New Era

In May, we re-branded to Metabolic Support UK to be more inclusive to the wider IMD community and to allow people to find us more easily. With a new name and identity, we have reached more and more patients this year – around 600 in total! We have had a presence at conferences and events across the UK and been able to raise awareness about Inherited Metabolic Disorders with healthcare professionals, the public and students. New projects have been launched in line with this new name and we’re excited to reveal more exciting projects to you in 2019!

Metabolic Disorders Awareness Week

Metabolic Disorders Awareness Week was incredible! This year, we launched our Metabolic Mile campaign and we loved seeing your miles and how supportive everyone was of each other! Special mentions ought to go the Urea Cycle Disorder Group, who created a video about their Metabolic Mile, which reached 6,800 people(!!), and Sam Marshall and John Burniston, who ran an incredible Metabolic Mile fundraiser in honour of their son, Oscar, who is bravely living with MCADD (Medium-chain-acyl-CoA dehydrogenase deficiency), which raised an astounding £4,107.50! All your efforts to support Metabolic Disorders Awareness Week were amazing and we’re incredibly appreciative of your enthusiasm and drive to support this special week.

Fundraising

Your fundraising didn’t however stop at the Metabolic Mile! 15 fantastic supporters of Metabolic Support UK took to the streets of London for the London Marathon in April! It was a hot one this year – 24 degrees! – and we are in awe of each runner’s motivation to get to the finish line and all the amazing fundraising they did! We’re also incredibly proud of Duncan Campbell, who completed RideLondon 100 in support of Metabolic Support UK in August, and who raised an incredible £1,190 for us!

**Duncan Campbell, our 2018 RideLondon 100 Cyclist!**

Not to be forgotten are the many other fundraisers, who have supported us throughout the year with bake sales, sporting challenges, Christmas card sales and more! We appreciate every single penny we receive, and your donations always make a huge difference to supporting vital services that help patients and families with Inherited Metabolic Disorders. Thank you!

New Faces

Last year, Metabolic Support UK were a team of 5. Now, we’re a team of 11! In March, we welcomed our new Finance Administrator, Andrea, to the team. This was followed by Jess, our Core Services Manager and Maggie, our Marketing and Fundraising Officer, in April. Then in July, we welcomed Pushpa, our Patient Access to Diagnosis and Treatment Researcher to the team; in September, our Research and Administrative Officer, Bruce; and finally, in November, our NextGen Project Officer, Sally!

In addition to that, we have 10 amazing new Ambassadors, who will be supporting Metabolic Support UK through fundraising and awareness raising in their locality.

By having more people on the team, we hope to reach more patients and families with Inherited Metabolic Disorders and develop further projects to support you as best possible and to raise awareness about IMDs.

Connecting People

For the first time this year, we held a Patient Day at Manchester Science and Industry Museum! We were delighted to see old faces, and some new ones too, and to give everyone the chance to meet the team and each other! It was also a great opportunity to hear of how we can be of more support to you and for you to hear about some of the ways we can help you as well. We hope to run a similar event in the near future and will be releasing details about our next event soon!

2018 has been incredible for Team Metabolic. Nevertheless, we are excited for 2019 and to reach more patients and families with Inherited Metabolic Disorders; to continue to raise more awareness of IMDs; and to develop further projects to support you.

We hope you all have a great start to 2019 and that it is a great year for you all!

December Guest Post: Nutricia Metabolics

Posted on December 13, 2018 by Maggie Allan

We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.

There’s no denying it now, we’re definitely in the festive season. Shop windows are exploding with fairy lights and here at Nutricia HQ we’re thinking about the festive recipes we want to share with you.

Our recipes for the month of December are perfect for this time of year. The roasted vegetables are delicious at dinner time, while the Ginger Biscuits are a perfect little treat to enjoy while sitting down in the evening after a busy day. These are just a selection of the recipes that you can find on www.lowproteinconnect.com. Don’t forget to share your low protein creations with us on social media!

We hope you enjoy the festive season and we wish for the New Year to bring health and happiness to you and all your loved ones.

Best regards,

Amy at Nutricia Metabolics

Recipes of the Month:

Christmas Roasted Vegetables:

Please click on the image to see the recipe.

Ginger Biscuits:

Please click on the image to see the recipe.

You can keep up-to-date with Nutricia Metabolics on social media too!

Facebook: Low Protein Connect

Instagram: @lowproconnect

Twitter: @lowproconnect

YouTube: LowProteinConnect

Is there a topic that you would like to read about? Or maybe you have an idea for our Recipe of the Month? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

A-Z of Fundraising Ideas: D

Posted on December 7, 2018 by Maggie Allan

Continuing our blog series of fundraising ideas, today is brought to you by the letter D!

Dinner Party – Host a dinner party with a theme of your choice for family and friends. You could charge people for attending your dinner party and host an auction or raffle, to add to the entertainment of the evening!

Darts Competition – Contact your local pub and organise a darts competition there – ask if your pub can donate a drinks tab to the lucky winner too! Consider holding a raffle on the night, to raise more funds for your cause.

Disco – Who doesn’t like a good old dance? Music, disco lights and potentially some karaoke makes for a great event and fundraiser! So, make sure you have your dancing shoes at the ready for this one!

Doughnut Eating Competition – Ever played the doughnut game of trying to eat a sugary doughnut without licking your lips? Or perhaps you’ve tried the doughnut string game, where you have to attempt to eat a doughnut off a washing line, without using your hands? Either way, why not host a doughnut eating competition and charge your friends to attend? Make a leader board of the winners and see who is crowned victorious!

Dog Sitting Services – Do you often dog sit for friends and family and get gifts in return? Why not suggest they give you donations for charity instead of this gift? Happy dog, happy humans and fundraising at the same time – perfect!

Some of these activities are great as stand-alone events, and some can be run together to support a bigger event.

If you have any activities planned, we would love to hear about them! Please get in touch with Maggie on margaret@metabolicsupportuk.org about your event and we will support and promote your activities as much as we can!

National Baking Week – Ready, Steady, Bake!

Posted on October 19, 2018 by Maggie Allan

From Monday 15^th – Sunday 21^st October 2018 it is National Baking week! National Baking Week is a great week to celebrate the cherry bakewell, the chocolate brownie and the unforgettable gooey chocolate chip cookie! However, if you have an Inherited Metabolic Disorder, you may not be able to indulge in all these bakes, as they come from the supermarkets’ shelves. That’s why we’ve created a list of providers, who offer some suggestions on baking recipes suitable for patients with certain Inherited Metabolic Disorders!

Adapting to a new diet or avoiding certain foods, due to your condition, can be tricky. With Inherited Metabolic Disorders, the foods you must avoid can differ hugely, depending on your condition and the severity of it.

As your patient organisation, we want to help you in every stage of your journey with an Inherited Metabolic Disorder, including adapting to your new dietary requirements. Here, we’ve collated a list of places you can find recipe ideas to suit your diet.

Low Protein Connect

Low Protein Connect are a medical nutrition company, who offer advice on medical nutrition; sell products to help with special dietary cooking; and organise family days out. Their website also has recipe suggestions for those on a low protein diet. You can check out their recipes and find out about the events they offer on the following links:

Website: www.lowproteinconnect.com

Facebook:Low Protein Connect
Instagram: @lowproconnect
Twitter: @lowproconnect

YouTube: LowProteinConnect

Mevalia

Mevalia is a company, who produce low protein goods, as well as suggesting new ideas for low-protein recipes. We’ve heard their pizza bases are particularly good! To discover more about Mevalia and for recipe ideas, check out their website:

Website: http://www.mevalia.com/en/

VitaFriendsPKU

VitaFlo is a supplier of low-protein supplements and who also offer advice on recipes. Organising meet-ups for patients and families is also one of the services they provide. To keep up-to-date with VitaFriendsPKU events and recipes, check out the following links:

Website: https://www.vitafriendspku.com/en/

Facebook: https://www.facebook.com/vitafriendsPKU.uk

VitaFriendsMSUD

VitaFriendsMSUD is a supplier of low protein products suitable for MSUD patients. They also have advice on recipes for MSUD patients and organise meet-ups for their patients and families. To see what VitaFriends MSUD offer, please visit their website:

Website: https://www.vitafriendsmsud.com/en/

PKU Organic:

This US based blogger focusses on recipes for PKU patients. A PKU patient herself, her blog offers a variety of exciting and delicious low protein recipes, as well as advice on travelling with PKU and other topics. Check out her blog on the following links:

Website: https://jbhorsi.wixsite.com/organicpku

Instagram: https://www.instagram.com/organicpkufor2/

Pinterest: https://www.pinterest.com/organicpkufor2/

Dietician’s Life

Inherited Metabolic Disorder Dieticians Louise and Sarah set up a blog to share recipes, advice and insights into their own lives as dieticians. To get an insight in the life of a dietician and for further advice on your diet, please see the following links:

Website: https://www.dietitianslife.com/

Facebook: https://www.facebook.com/Dietitians-Life-809525895762015/

Twitter: https://twitter.com/louisedietitian

Pinterest: https://uk.pinterest.com/dietitianslife/

Instagram: https://instagram.com/dietitians_life

We hope these websites and links might provide you with some bake-spiration this weekend! Happy baking!

If you have suggestions of other recipes sites, which have recipes suitable for patients with Inherited Metabolic Disorders, please contact Maggie on margaret@metabolicsupportuk.org

#MyMetabolicLife

Posted on October 1, 2018 by Maggie Allan

October has arrived – where has the year gone! Despite the year rapidly marching on, there is still time for a social media challenge!

This October, we’re challenging you to a 32-day photo challenge! For this challenge, we’re asking you to take a picture of a different theme each day, and to share your take on these with us and the Inherited Metabolic Disorders community through Instagram, Facebook or Twitter! It’s a great way to share what it’s like living with an Inherited Metabolic Disorder, and it also gives you the perfect excuse to take loads of photos!

Through our social media accounts, we love seeing your photos of everyday life – from your back-to-school photos to your holiday snaps to your day trips out. We’ve also loved seeing how you’ve got involved with our many campaigns through your photos from the Metabolic Mile and the Metabolic Selfie campaigns! So, we wanted to give you another reason to get snapping some pictures! But this time, we want you to share with others what it’s really like to live with an Inherited Metabolic Disorder – from what you eat, to how you feel, to what you can and can’t do on a daily basis – helping make those within the Inherited Metabolic Disorders community feel less alone and better knowing that they’re not the only ones, whose lives may be slightly different to others with the pressures of special diets, medications and medical appointments.

The Metabolic Support UK team will be getting involved on their social media accounts. We’ll be giving you an insight into the day-to-day workings of Metabolic Support UK HQ and into the lives of our team here in Chester!

Take a look at the themes for each day of October:

We can’t wait to see your photos! Don’t forget to tag us in your post on social media and to use the hashtags #MyMetabolicLife and #MetabolicSupportUK

Good luck with the challenge!

Check out Metabolic Support UK’s photos on the following pages:

Facebook: https://www.facebook.com/MetabolicSupportUK/

Twitter: https://twitter.com/MetabolicSuppUK

Instagram: https://www.instagram.com/MetabolicSupportUK/

For further queries about the #MyMetabolicLife challenge, please contact Maggie on margaret@metabolicsupportuk.org

Jeans for Genes Day

Posted on September 17, 2018September 21, 2018 by Maggie Allan

This week on Friday 21^st September, it’s Jeans for Genes Day! This day is the annual fundraising event for Genetic Disorders UK, which aims to raise awareness about genetic disorders and the impact they have upon families and patients. Get involved by sharing your story and showing off your best denim!

Who is Genetic Disorders UK?

Genetic Disorders UK is a UK registered charity supporting patients and families with genetic disorders. The charity is run by a small team, who share advice and support on life with a genetic disorder through their free and confidential helpline and their comprehensive website. Patients and families can access their website on the following link: http://www.geneticdisordersuk.org/

They offer grants to families and patients, to help with the costs associated with living with a genetic disorder, as well as signposting to different organisations, who can help with financial assistance.

Jeans for Genes Day is their annual fundraising event, where they encourage everyone to wear jeans. Through this day, they aim to raise enough money, to enable their team to continue providing the much needed emotional support and grants to patients and families living with genetic disorders.

As an umbrella patient organisation, they endeavour to continuously signpost to different disease specific patient organisations, who can support patients with more up-to-date knowledge relating to their conditions.

Why Support Jeans for Genes Day?

By wearing jeans on Jeans for Genes Day, you can help to raise much needed awareness of genetic disorders. 4,000-6,000 genetic disorders are known to exist and 1 in 25 people have been diagnosed with a genetic disorder; 30,000 children are diagnosed with a genetic disorder each year.

How to Support?

There are many ways you can support Jeans for Genes Day. You can support the day by:

Wearing jeans! – You can wear your comfiest slouchiest and favourite jeans, or find your inner fashion guru and brave the double denim!
Posting a picture of you wearing jeans – Use the power of social media and spread the word about Jeans for Genes Day by posting your picture on social media along with the hashtag #jeansforgenes. Don’t forget to tag us in your post!
Sharing your story – Share why you’re supporting Jeans for Genes Day and why the day is important.
Donating to Metabolic Support UK via Jeans for Genes – We are a partner of Genetic Disorders UK, meaning 50% of anything you fundraise and donate to Jeans for Genes, (after mentioning you’re affiliated with us) will be sent to us!
Getting your school or workplace involved – Head to the Jeans for Genes Day website and sign up your workplace or school to this day, and have some fun showing off your best denim.
Hosting a jeans-orientated fundraiser – This could be a jeans dinner party, where you could ask everyone to show off their best denim, or see who can wear the most denim in one outfit! Or host a jeans craft day and get people to decorate a pair of jeans they own. They could even make a new bag or wristband from an old pair of jeans!

There are plenty of ways to support Jeans for Genes Day. We’ll be getting our denim on at Metabolic Support UK HQ!

Let us know how you’re celebrating this year! #jeansforgenes #awareness

For more information and ideas, please visit https://www.jeansforgenesday.org/

September Guest Post: Nutricia Metabolics

Posted on September 11, 2018September 11, 2018 by Maggie Allan

We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.

The leaves are changing colour, the days are getting cooler and we’re swapping summer salads for winter soups, stews and casseroles.

Our recipes for the month of September are inspired by back-to-school and autumn. These are just a selection of the new recipes that you can find on www.lowproteinconnect.com. The low protein tomato pasta bake is perfect for batch cooking and serving during the busy week.

Don’t forget to share your low protein creations with us on social media!

Best regards,

Amy at Nutricia Metabolics

Recipes of the month

Pasta Bake

Please click on the image to see the recipe.

Gardener’s Pie

Please click on the image to see the recipe.

You can keep up-to-date with Nutricia Metabolics on social media too!
– Facebook: Low Protein Connect
– Instagram: @lowproconnect
– Twitter: @lowproconnect

– YouTube: LowProteinConnect

Is there a topic that you would like to read about? Or maybe you have an idea for our Recipe of the Month? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.

Top 10 Tips for Starting University with an Inherited Metabolic Disorder

Posted on September 7, 2018 by Maggie Allan

Kids are now back to school and soon enough university students will go back to their studying as well! For many young people, the step between university and high school can be huge. But for university students with an Inherited Metabolic Disorder, it can be an even bigger step with there being even more things to take into consideration.

Here, our guest blogger, Chloe Easton, gives her top tips on things you should consider before heading to university if you have an Inherited Metabolic Disorder.

Hi, I’m Chloe and I have an Inherited Metabolic Disorder – Phenylketonuria (PKU for short) – which basically means my body can’t break down large amounts of protein. So, I have to keep track of my daily protein intake. As I’ve just recently finished my undergrad degree, I thought I would put together a list of top tips for starting university with an Inherited Metabolic Disorder. If you are starting university soon, I’m hoping this will be of some use to you!

1.Get baking!

Living with PKU means that sometimes I have to eat special low-protein foods and my meals often have to

be homemade. A large part of my diet involves making low-protein bread. So, before I started uni, I had several trial runs of baking this, as it was something I had always relied on my Mum for. If you, like me, need special foods for your metabolic disorder, I would definitely recommend spending a bit of time practising baking or meal preparation. As when you finally come to do this yourself at uni, it might not feel as daunting.

2. Contact your new doctor

This is something I didn’t actually do myself, but in hindsight it would have been beneficial! I think it is always a good idea to get in touch with your new health centre or doctor, prior to starting uni, just to let them know what’s what. Tell them about your metabolic condition and what will be required from them. In my case, my new doctor had never even heard of PKU until meeting me, and arranging prescriptions was sometimes frustrating because the system was slightly different to what I was used to back home. However, if I had tried to work this out before moving to uni, the transition probably would have been a lot smoother.

3. Invest in a mini fridge

If you have certain foods which need refrigerating, you can request permission to have a mini fridge in your

room. This is something I did throughout all three years of university, just because I didn’t feel completely comfortably storing my protein supplements, etc, in the communal fridge. Most, if not all university halls will have no problem with this, because, after all, it is for a medical purpose. My university halls certainly didn’t mind – but it’s always best to check. This also means people won’t eat your food!

4. Pack plenty of supplies

Upon moving to university, it is important to make sure you are stocked up on the essentials of what your condition requires. For me, it was making sure I had enough of my low-protein foods to get me through the first few weeks, just in case there was any trouble sorting out prescriptions. I didn’t want to risk running out. If you have PKU like me, I would say the Mevalia pizza bases are a good item to pack. If you and your flatmates decide to have a takeaway night, then you don’t have to miss out!

5. Chat to new flatmates before moving in

If you are a bit nervous about meeting your new flatmates and having to explain your metabolic condition to them, then I would recommend trying to get in touch with them before moving in. I managed to find my new flatmates on a university Facebook page and then we started up a group chat together. This was great because I was able to get to know who I would be living with, but I also decided to tell them about my PKU in this chat and mentioned that I would be bringing a bread-maker machine too. Getting all of this off my chest before arriving calmed my nerves slightly, and also meant I wasn’t as worried about turning up on the first day with a bunch of “strange” food.

6. Get involved with societies

Although you might feel slightly different because you have a metabolic condition, this doesn’t mean you have to have a different university experience compared to the typical student. Make sure you get involved with societies and the various things your uni has to offer. I was a part of the English society at Lincoln for 2 years and during this time I took part in many socials (from bar crawls to student nights at a kid’s play zone). In my final year, I was a writer for the university’s online student newspaper – The Tab Lincoln. Don’t exclude yourself, just because of your condition!

7. Mingle with other students

Following on from my previous point – another great reason to get involved with societies is because this will help you to mingle with other students and hopefully build up friendships. In my experience, having a friend at uni is even more important than in any other situation because when things sometimes become overwhelming to deal with, (whether that be in relation to your metabolic condition or not), they can be there to support you when your parents can’t.

8. Student Wellbeing are here to help

Another great support system that will always be there for you is Student Wellbeing – designed to help students with any problem at all, be it financial or emotional, they are there for you. Moving away to a new place, amongst new people can be daunting in itself, but when you have a metabolic condition to deal with as well, it can be even more of a challenge. So, don’t be afraid to ask for support if you need it.

9. Don’t be afraid to just be yourself

I have always been a shy person and very self-conscious about my condition around other people. Before starting uni, I remember feeling anxious about how people (my flatmates in particular) would receive my PKU. But honestly, this was an unnecessary worry because they were so understanding and just let me get on with what I needed to do. In fact, they once told me they loved it when I baked my low-protein bread because it made the flat smell so nice! I learnt that, generally speaking, people aren’t going to have an issue with your condition – so don’t worry.

10. Have confidence!

Above all in my opinion, the most important thing is to have confidence that you can do it! When I first started university, it was one of the first times I had dealt with my PKU independently, and so it was quite overwhelming. But, like most things, with time it became easier. Now three years later, it feels like nothing has even changed.

Thank you so much Chloe for sharing your tips on things to consider before heading to university – some really great advice for students heading to uni for the first time, and for those heading back to university for yet another year of their degree!

Chloe writes a blog called “What it’s really like living with PKU...”, which includes some really great tips for young people growing up with PKU. Take a look at her blog on the following link: https://thepkulife.blogspot.com/

If you’d like to be a guest blogger for Metabolic Support UK, please contact Maggie on margaret@metabolicsupportuk.org

FUNDRAISING: A Metabolic Mile for Oscar

Posted on August 31, 2018October 25, 2018 by Maggie Allan

Here at Metabolic Support UK, we are blessed to have some wonderful supporters. During Metabolic Disorders Awareness Week 2018, we launched our Metabolic Mile campaign. We were amazed by how many of you took on a Metabolic Mile to show support and solidarity

**Sam Marshall and John Burniston. Credit:** John Burniston.

for families and patients living with Inherited Metabolic Disorders. One couple, Sam Marshall and John Burniston, even decided to organise a Metabolic Mile fundraiser!

Sam and John’s Metabolic Mile fundraiser took place on Sunday 19^th August 2018 in their hometown, Barnoldswick (Lancashire). They did their fundraiser in honour of their son, Oscar, who is bravely living with MCADD. Maggie, our Marketing and Fundraising Assistant caught up with John, to hear how it all went!

“Hi Maggie,

I just wanted to let you know about our event on Sunday. It was a huge success and we received an amazing amount of support from our friends, family and the local community. We had a really good turnout for the walk, despite the weather! Around 80 people took part in the walk, with more people joining us for the rest of the day.

**Metabolic Mile Walk. Credit:** John Burniston.

After the walk, we had a kids’ treasure hunt in the grounds of the club, where the kids had to find some painted stones, which had pictures of different cartoon characters. Various clues helped the kids find the stones. Underneath each stone there was a letter, which when combined with all the other letters would reveal a hidden message.

After the treasure hunt, Tanya (a newly appointed Community Ambassador) gave a speech about Metabolic Support UK and explained the reasons we were doing the fundraising. We feel this achieved our aim of raising awareness about Inherited Metabolic Disorders and we had a lot of positive comments and questions about the patient organisation and particularly about Oscar’s condition.

This speech was followed by the pre-recorded horse races and the auction race, where a lot of individuals were very generous with their bids, which gave our total a good boost.

Next came the huge raffle where we had over 60 amazing prizes, which were all donated by local businesses, along with some items people wanted to donate to help us with our raffle. A few items were quite expensive. So, we decided to auction these off. These items included a photoshoot plus digital prints worth £500, a Bluetooth speaker system, a day’s use of a chauffeur driven Rolls Royce Ghost, a voucher for alloy wheel refurbishment or bodywork worth £140, and a quality bicycle light system worth over £150. These items were sold successfully and raised a healthy amount to go in the pot.

**Treasure Hunt Stones! Credit:** John Burniston.

Lastly, Sam’s uncle kindly offered to close the afternoon by singing a few songs for us.

All in all, it was a very successful event, and everybody said it was a really good day for the kids, as well as the grown-ups!! We believe we have £2,900, as it stands, with more money coming in!

We have left some wristbands on sale with the bar, as they were happy to support the cause and to continue to sell these to their customers for us.

Thank you for your help in supporting us and helping us make this event such a success. We will continue to do more in the future too!

John”

**The Metabolic Mile Fundraiser team with Tanya, our new Community Ambassador.**

Since the Metabolic Mile event, it has been revealed that the total amount fundraised by the couple stands at £4,107.50!!! This is thanks to the many kind donations on the day, sales of wristbands prior and post the event, and a family member completing a swim, whose employers agreed to double the amount she fundraised.

We want to thank John and Sam, as well as all those who helped support and organise this amazing day! It sounds like it was massively successful and great fun for all involved! We also want to thank Tanya Brindle, one of our new Community Ambassadors, who supported the day by doing a presentation about Metabolic Support UK. A great team effort and we can’t wait to hear what fundraiser Sam and John will organise next!

**The Metabolic Mile Team! Credit:** John Burniston.

If you’d like some help organising a fundraiser like Sam and John, please get in touch with Maggie on margaret@metabolicsupportuk.org or 0845 241 2173.

Equally, if you’d like to become a Community Ambassador like Tanya, please click here or email Julie on julie@metabolicsupportuk.org.

Fundraising total correct to our knowledge at time of publishing.

Preparing for School – Alison’s Tips

Posted on August 23, 2018 by Maggie Allan

Leaving your child in someone else’s care is a stressful time for any parent. But leaving a child with an Inherited Metabolic Disorder at the school gate comes with an additional set of worries and concerns.

In this blog post, teacher and mum, Alison Hardy, shares her experience of preparing her daughter Poppy for school, and offers advice to parents and teachers on the key questions to ask.

Was choosing a school any different for Poppy?

Our experience of choosing a nursery for Poppy wasn’t easy. Poppy has a Urea Cycle Disorder called Hyperornithinemia Hyperammonemia Homocitrullinuria (HHH) and one nursery refused to take her because of her condition, which was very distressing. Fortunately, we have one daughter already in mainstream school. So, we had some idea of what to expect from the application process. The main difference was we contacted the Special Needs Coordinator at our first-choice school and started discussions about Poppy’s needs as soon as our application went in.

What are the key questions to ask when choosing a school?

What experience do you have caring for children with special needs?
Will the teaching staff be happy to administer medication?
Can the kitchen weigh and measure your child’s protein intake?
Will the school allow your child to eat outside of regular mealtimes to maintain energy levels?
What’s your procedure for sharing medical information with supply teachers?

How are you preparing Poppy for school?

Poppy is very excited about starting school. She is definitely ready! I’ve explained that she will be sitting with all her friends, so she won’t be frightened, and that she must tell a teacher if she doesn’t feel well. Food is a real source of anxiety for us, as children are encouraged to have school dinners. To control her protein intake, Poppy will have to take her own packed lunch. We don’t want her to feel left out, so we’ve let her choose her own special lunch box and will involve her in selecting and preparing all the food she takes with her.

What will the first day of school be like for you?

I’m in no doubt my anxiety levels will be off the scale! It’s a new experience for us all. But Poppy is ready and she will take it all in her stride.

Alison’s Action Plan for Parents

Before you apply to a school, talk to the Special Needs Coordinator and ask whether the school can manage your child’s medical condition.
Once your place is confirmed at a school, keep talking to them before your child starts school. Establish a point of contact and build the staff’s knowledge and confidence to care for your child.
Tell the school you must be kept informed of all illnesses circulating at school. It’s better for you to have too much information than too little.
Make sure every member of staff knows your child and what to do in an emergency.
Explain the physical limitations your child may have and if they need to do any physio during the school day.
Prepare an information pack for the class teacher to include:

A medical diagnosis sheet.
Information sheet on your child’s condition (download from the Metabolic Support UK website).
A photograph of your child.
Your child should also carry their BIMG information sheet and a copy of their hospital notes in their school bag.

Teachers – what you need to know:

Key symptoms to look out for.
How often and what the child needs to eat e.g. for snack time.
What to do if the child is unhappy or falls ill.
How to administer medication.
Who to contact in the event of an emergency.
Any changes to the child’s condition and how this might affect treatment.

Alison writes a blog about her family’s journey living with an Inherited Metabolic Disorder. You can read it at: poppysjourney.wordpress.com and you can read more about Poppy’s story on our website on the following link: https://www.metabolicsupportuk.org/alison-hhh/.

Alison will be speaking at our Patient Days this Autumn and giving further advice on steps to take with children starting school.

For more advice on your child starting school, please contact our Core Services team on 0845 241 2173.

August Guest Post – Nutricia Metabolics

Posted on August 6, 2018 by Maggie Allan

We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.

**Amy from Nutricia. Credit:** Nutricia.

We hope you’re having a brilliant summer so far. Here at Nutricia Metabolics HQ, we’ve been spending the summer testing out lots of new recipes.
Our recipes of the month for August are just a couple of the newbies that you can find on our website www.lowproteinconnect.com. They are inspired by the sun and the low protein potato cakes are perfect for packing up and taking with you for a picnic.
Don’t forget to share your low protein creations with us on social media!
Best regards,
Amy at Nutricia Metabolics

Recipes of the Month
Vegetable Risotto:

**Vegetable Risotto**
**Credit:** Nutricia.

Click the image to see the recipe!

Potato Cakes:

Click the image to see the recipe!

You can keep up-to-date with Nutricia Metabolics on social media too!
– Facebook: Low Protein Connect
– Instagram: @lowproconnect
– Twitter: @lowproconnect
– YouTube: LowProteinConnect

Is there a topic you that would like to read about? Or maybe you have an idea for our Recipe of the Month? Reach out to us on social media. We hope you enjoy reading our blog and trying our recipes.

Nutricia are the leading provider of medical nutrition products and a source of dietary information for patients following a low protein diet. Through our monthly guest blog, we share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes of the month. This newsletter is intended for patients with an Inherited Metabolic Disorder and following a Low Protein Diet.

Jess’s Rainbow Ball

Posted on July 26, 2018July 26, 2018 by Maggie Allan

On Friday 25^th May 2018, Jess Allamby, an incredible supporter of Metabolic Support UK, held a rainbow ball in memory of her son Ethan and to raise money for Metabolic Support UK. The Metabolic Support UK team were invited to attend this wonderful event and were so pleased to be there and to support Jess.

**The Metabolic Support UK Team at the Rainbow Ball.**
**Credit:** Jess Doyle.

The rainbow ball took place at The Bridge Hotel in Wetherby, which was a beautiful location for the event. When guests arrived, they had their picture taken in front of the hotel and were treated to a welcome drink. All guests were also given a rainbow band, which was tied around their wrists to mark the special occasion. Plus, it helped keep everyone in theme with the beautiful rainbow decorations on the tables – it all looked stunning!

**Beautiful Rainbow Decorations at the Ball.**
**Credit:** Maggie Allan.

Jess made a speech at the beginning of the night to thank everyone for supporting the event, which was in memory of her son Ethan, and marked what would have been his fourth birthday. Ethan was born with Ornithine Transcarbamylase (OTC) Deficiency and very sadly passed away aged 10 months. Metabolic Support UK have been supporting Jess and her family from Ethan’s diagnosis to the current day. After Jess’s speech, she invited the Metabolic Support UK team to talk about the work we do and how we help support families and patients with Inherited Metabolic Diseases.

After the speeches, guests were treated to an amazing three course meal! The meal was delicious, and was followed up by an auction and raffle, with lots of fantastic prizes on offer! So, there were plenty of happy people after the wonderful meal and the prize giving!

**GT & the Speedways at the Rainbow Ball.**
**Credit:** Maggie Allan.

With some very happy guests, people were invited to hit the dancefloor, which started with some great tunes from a Yorkshire based swing band, GT & the Speedways. The band certainly got everyone up and dancing. Then once the band had finished playing, a DJ took to the floor. So, everyone was plenty able to dance into the early hours!

After a wonderful night, the last song, ‘Let it Go’ from Frozen, had to be dedicated to Ethan. Everyone was invited onto the dancefloor for this song and to remember the main reason we were all at the event.

The ball was incredible from the wonderful food and music, to Jess’s amazing hosting skills. In all, it was a very special way to remember Ethan and to commemorate his life.

The Metabolic Support UK team feel very honoured to have such an amazing fundraiser and advocate in Jess. The night even raised an incredible £1,216!! Thank you Jess and all your friends and family for your support. You are inspirational to us all, and your amazing fundraising efforts will help us support more families and patients with Inherited Metabolic Disorders.

**The Metabolic Support UK Team with Jess! Credit:** Coley Chameleon.

If you want to fundraise, like Jess, for Metabolic Support UK, please get in touch with Maggie on margaret@metabolicsupportuk.org, and we’ll do our best to help you organise your first fundraiser!

Metabolic Disorders Awareness Week 2018!

Posted on July 16, 2018 by Maggie Allan

It’s just over a week since Metabolic Disorders Awareness Week 2018! For Metabolic Disorders Awareness Week, we had plenty of plans on the cards! From our parliament event, where we officially relaunched as Metabolic Support UK, to the hundreds of people who took on the Metabolic Mile, it was a very exciting week!

Metabolic Support UK Relaunch at Parliament!

Monday 2^nd July was the date of our official relaunch as Metabolic Support UK, which took place at the Houses of Parliament!! As many of you may be aware, we decided to change our name at the beginning of May after conducting many focus groups about a potential name change. Overall, most people were in favour of the name change and Metabolic Support UK was chosen as the new name to reflect a new era in the life of our patient organisation!

Our parliament event was attended by a wide range of people from the Inherited Metabolic Disorders community. Attendees included patients and families living with Inherited Metabolic Disorders, patient organisations supporting those with rare conditions and Inherited Metabolic Diseases, and pharmaceutical companies, who provide the vital medication and research that support patients living with Inherited Metabolic conditions.

The event was started off with a few words from our Acting Chief Executive, Joanne Taylor, our Chair, Nigel Eaton, one of our trustees, Josie Godfrey, and one of our patients, Tom Wadsworth. All talked of the work Metabolic Support UK do and how changing the name would help us reach out to more patients and make it clearer about the conditions we support.

Everyone was able to chat at the event and it was a great way to bring the Inherited Metabolic Disorders community together.

**Goodie Bags!**
**Credit:** Joanne Taylor.

At the end of the event, everyone was given a Metabolic Support UK goodie bag, which included one of our new Metabolic Support UK Patient Leaflets, one of our new magazines, Metabolic Matters, a Metabolic Support UK pen, and a Metabolic Support UK cupcake!

The event was a very special way to open Metabolic Disorders Awareness Week and for us to officially relaunch as Metabolic Support UK!

If you want to learn more about the Metabolic Matters magazine and how you could feature in the magazine or receive a copy, please contact Maggie on margaret@metabolicsupportuk.org.

Facebook Profile Picture Frames

For Metabolic Disorders Awareness Week, we encouraged you all to change your Facebook profile picture to include our Metabolic Support UK frame! We were amazed by how many of you changed your profile picture to show support for Metabolic Support UK. By everyone changing their profile picture, it can help raise more awareness of our patient organisation and allow us to educate more and more people about Inherited Metabolic Disorders and the impact it has upon families and patients.

#MetabolicMile

This year we launched our new campaign: the Metabolic Mile! We were overwhelmed by how many of you got involved and took on a Metabolic Mile to show support and solidarity for those living with Inherited Metabolic Disorders. The Metabolic Support UK team did their Metabolic Mile around Chester Business park in 80’s fancy dress! Throughout the week so many different miles were done – from those dressed as superheroes and princesses to those doing it with friends, family and pets – there were so many miles done and we loved seeing them all!

Donations

This Metabolic Disorders Awareness Week, some people decided to make their Metabolic Mile a sponsored challenge! You raised some incredible money for Metabolic Support UK – at the moment the total stands at £2,287.02! From the £1 donations to the donations totalling to hundreds of pounds, every contribution is appreciated and helps us provide vital services to families and patients living with Inherited Metabolic Disorders.

There’s still the chance to donate to our Metabolic Mile Just Giving page via the following link: https://www.justgiving.com/campaigns/charity/climb/metabolicmile.

Wristband Pride

Following on from our #mymetabolicselfie campaign we launched a couple of years ago, where we asked you all to take a selfie with your wristbands, we’ve seen a growing pride in our wristbands! During this year’s Metabolic Disorders Awareness Week, we were giving away our wristbands for free and saw so many of you showing off your wristbands and helping us start the conversation about Inherited Metabolic Disorders with others.

Metabolic Disorders Awareness Week 2018 has been amazing! From the many miles you’ve all walked, cycled, run and done, as well as raising more and more awareness about Inherited Metabolic Diseases through changing your Facebook profile pictures, wearing your wristbands with pride and sharing your stories, all your efforts to support Metabolic Disorders Awareness Week have been incredible! We’re so grateful to have supporters as wonderful as you all are and thank you all so much for your continued support.

Want to Further Support Metabolic Support UK?

You can discover more ways to fundraise for Metabolic Support UK by contacting Maggie on margaret@metabolicsupportuk.org, or keep an eye out for upcoming news about our new Ambassadors programme!

JUNE GUEST POST: Nutricia Metabolics

Posted on June 25, 2018June 25, 2018 by Maggie Allan

We are delighted to share another guest post from our friends at Nutricia Metabolics; the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.

How amazing has the weather been recently? Finally, a summer we can really talk about.

June has been a busy month in Nutricia HQ with lots of new and exciting resources appearing on our website www.lowproteinconnect.com. You can now find tips for cooking the perfect rice and pasta, a range of new recipes (2 of which we’ve shared below) and our holiday support guide.

Our recipes of the month for June are inspired by the sun and are perfect for packing up and taking with you for a picnic. And don’t forget to share your low protein picnic ideas with us on social media!

Best regards,

Amy at Nutricia Metabolics

Recipe of the Month – Banana Bread

Click the image to see the recipe!

Recipe of the Month – Lavender & Lemon Shortbread

Click the image to see the recipe!

You can keep up-to-date with Nutricia Metabolics on social media too!

Facebook: Low Protein Connect
Instagram: @lowproconnect
Twitter: @lowproconnect
YouTube: LowProteinConnect

10 Reasons to do the Metabolic Mile!

Posted on June 21, 2018 by Maggie Allan

Recently we told you about our campaign for Metabolic Disorders Awareness Week 2018: the #MetabolicMile! For this, we’re asking everyone to complete a mile in any way of their choice, to show solidarity and support for families and patients living with Inherited Metabolic Disorders. If you’re still unsure of whether you want to take on this fun challenge, read our top ten reasons why you should take on the Metabolic Mile and join in the fun!

1. To Show Solidarity for those with Inherited Metabolic Disorders

We’ve all got very busy lives but Metabolic Disorders Awareness Week is one of the best times to take time to connect with the rest of the Inherited Metabolic Disorders community. By doing the Metabolic Mile, you can show your support for patients and families with Inherited Metabolic Disorders, and that nationally, and even internationally, we are all here for each other.

2. To Increase Awareness of Inherited Metabolic Disorders

Many people may not know what Inherited Metabolic Disorders are. That’s something we want to change. By people completing the Metabolic Mile and sharing their story with others when completing the Mile, we can help increase awareness of Inherited Metabolic Disorders, in terms of what they are and how they affect families and patients.

3. Opportunity to Support Metabolic Support UK

Metabolic Disorders Awareness Week is one of the most important weeks in the year to our patient organisation. Plus, it is also one of the best weeks for us to make our voice heard. By more people doing the Metabolic Mile and sharing this event with their friends, families and colleagues, you can help make our voice even louder and help us reach out to more people, who can learn about us, and who may need our support.

4. To Fundraise

If you’ve been looking for an opportunity to fundraise for Metabolic Support UK and haven’t found the right moment to do so, doing the Metabolic Mile could be the perfect way to get started with fundraising! Your mile could be done as a sponsored challenge? Or you could make your Metabolic Mile an event, with a walk and picnic included, and encourage people to join you for a donation? As a patient organisation, we rely upon donations. From all the amazing donations our supporters send us, we can provide our vital services to more and more families and patients with Inherited Metabolic Disorders. For that, we are forever grateful.

5. Another way to Keep Active

If exercise is a chore for you, signing up to do a mile for Metabolic Disorders Awareness Week could be a great way to encourage you to get active! With it only being one mile, it can be quite easily fitted into your day! You could leave for school early, and park further away to do a mile’s walk to school? Or you could do a mile’s walk to your local supermarket in the evening?

6. Good Excuse to Socialise

It can be difficult finding the time to catch up with everyone. But organising to do the Metabolic Mile could be the perfect excuse to catch up with friends and family! Decide on a place and time you want to do your Metabolic Mile and invite your friends and family to join you for it!

7. Time for You

When you do the Metabolic Mile, you could meet up with friends to do it. However, you could also do it by yourself, and use it as your “you” time. Completing a mile’s walk, run or cycle by yourself could be a great way to unwind and recharge.

8. Opportunity to Get Outside

Although the weather in the UK has been pretty fantastic recently, having another reason to get outside during Metabolic Disorders Awareness Week is definitely never a bad thing! Being outside in the fresh air can be very good for the soul, and a great way to unwind.

9. Excuse for a Day Trip

The Metabolic Mile challenge may only be a mile-long but it could be used as a good excuse to spend the day somewhere different! You could go for a mile’s walk followed by a picnic? Or you could go to your local National Trust property and do a mile’s walk around the gardens followed by a cream tea in the café? No need for the fun to stop at the Metabolic Mile!

10. Chance to be Creative

The thought of walking, running or cycling may not sound particularly exciting to you. But you can actually do your Metabolic Mile in any way you want! We’re even encouraging you to be extra creative and to do your mile in the most inventive way possible! The person with the photo of the most creative mile done will also win a £100 Amazon voucher! So, get thinking of ways you could do your mile!

To register for the Metabolic Mile, and to discover more about how you can get involved, please use the following link: https://www.metabolicsupportuk.org/awarenessweek/. If you would like even more information about the Metabolic Mile, please contact Maggie on Margaret@metabolicsupportuk.org.

If you take on this fun challenge, don’t forget to share your pictures and stories of your Metabolic Mile with us!

Good luck and we can’t wait to hear how you all get on!

National Volunteers’ Week: Thank You to our Wonderful Supporters!

Posted on June 6, 2018 by Maggie Allan

1^st– 7^th June is National Volunteers’ Week. As a patient organisation, we really appreciate those who endlessly work to support us.

Across the UK, it is estimated that 14.2 million people volunteer once a month. These volunteers also tend to do, on average, around 11.6 hours of volunteering work a month. Volunteers help charitable organisations enormously. Without volunteers, charities and patient organisations wouldn’t be able to survive. They help raise vital funds and awareness of different organisations and the work they do.

Without the awareness and funds that our wonderful volunteers raise for us, we would not be where we are today. We are forever grateful for the hard work of our supporters. From the races our volunteers complete in the name of Metabolic Support UK (from charity running gear to neon tutus and the many fancy dress outfits we’ve seen over the years!), to the balls, bingo nights and bake sales our volunteers organise, their incredible efforts help us support our members. Due to their fundraising efforts, we can offer an increasing amount of services to support our families, including our family advice service, family contacts network, conferences and patient days. From the funds our volunteers raise, we can also help push for further research and development of treatments for numerous Inherited Metabolic Disorders. More research can really help us better inform our members, and healthcare professionals alike, about different conditions and the best ways to manage them.

If volunteers don’t have the time or the means to fundraise, sharing stories and experiences, and raising awareness about Metabolic Support UK, and share how we can help is invaluable. Even just a few social media posts to raise awareness about our patient organisation can give us a better profile and allow families and individuals to find us more easily. As a result of this, we can help make patients and families feel better connected and informed about how they can get the help they need, from the diagnosis stage and beyond.

Equally having volunteers dedicate hours of their time to training for various sporting events to cross a finish line in the name of Metabolic Support UK is inspirational. No one’s efforts or time commitments to supporting us is left unnoticed.

We are very aware of how lucky we are to have such great volunteers and supporters, who tirelessly give up their time, efforts and commitment to fundraise and support us. Our volunteers make us who we are. Without them, we wouldn’t be able to support patients and families in the way we do. So, this post is for all our amazing supporters – thank you; you are all incredible.

If you can support us in any way possible, please let us know. You can find more information about how to fundraise and support us on the Get Involved page on our website.

Through spreading the word about Metabolic Support UK through fundraising and awareness campaigns, we hope we can better support you and be a friend to you, your family and friends.