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!
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.
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!
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.
Credit: Pixabay.com.
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.
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!
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!
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.
Continuing our blog series of fundraising ideas, today is brought to you by the letter D!
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!
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!
Credit: Pixabay.com.
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!
Credit: Unsplash.com.
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!
Credit: Unsplash.com.
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!
Credit: Pixabay.com.
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 Maggie on margaret@metabolicsupportuk.org about your event and we will support and promote your activities as much as we can!
From Monday 15th – Sunday 21st 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:
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:
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:
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:
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:
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:
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
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:
This week on Friday 21st 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!
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.
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.
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
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!
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.
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
Bread-making
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
Mini Fridge
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!
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 19th 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.
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.
Poppy Hardy
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:
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
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.
On Friday 25th 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!
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!
Credit: Matthew Rowland.
Monday 2nd 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!
Team Metabolic Support UK in 1980s Fancy Dress for their Metabolic Mile! Credit: Joanne Taylor.
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.
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!
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
Credit: LowProteinConnect.com.
Click the image to see the recipe!
Recipe of the Month – Lavender & Lemon Shortbread
Credit: LowProteinConnect.com.
Click the image to see the recipe!
You can keep up-to-date with Nutricia Metabolics on social media too!
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.
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.
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.
Credit: Pixabay.com.
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.
Credit: Unsplash.com.
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!
1st – 7th June is National Volunteers’ Week. As a patient organisation, we really appreciate those who endlessly work to support us.
Credit: Unsplash.com.
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.
Credit: Unsplash.com.
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.
Credit: Unsplash.com.
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.
2. Raise Awareness
Connecting People
