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’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.
Today, the 30th July, it is International Friendship Day. To celebrate this special day, we are launching our new Friendship Scheme!
Join our Special Community:
The Friendship Scheme is a new way to get involved with Metabolic Support UK and includes lots of new benefits! Our Friends are vital in helping us achieve our mission: a better life for patients living with Inherited Metabolic Disorders and their families. Become a Friend today and you will receive:
Our quarterly Metabolic Matters Magazine.
An exclusive discount code for 10% off products in our forthcoming online shop.
Free admission to our Patient Days and conferences.
Automatic enrolment onto the ‘Friends of Metabolic Support UK’ online forum. (This will be launched on our new website in Autumn 2018).
A summary sheet about your condition.
One free translation of your disorder summary, should you require it – helpful if you’re travelling abroad.
A Health Passport – a handy document to keep all your relevant health information easily accessible, in case of emergencies.
A Metabolic Support UK wristband and pin badge to wear with pride!
The new Friendship scheme costs just £36 per year (or £3 per month) and is a great way to make a regular donation to Metabolic Support UK. Your donations allow us to continue providing vital services to families and patients, and to continue fighting for better care and treatment for all those living with Inherited Metabolic Diseases.
If you’re already a Member of Metabolic Support UK?
Becoming a Friend will eventually replace the old membership scheme. If you are already a member, please don’t worry – we really value your continued support, and nothing will change immediately! Family and Professional members on the old scheme will automatically be transferred to the new Friendship scheme at point of renewal. If you are an existing Individual member (currently paying £24 per year/£2 per month), you are welcome to remain on this exclusive package for as long as you wish to remain on the scheme, unless you would like to upgrade and become a Friend.
For more information on the Friendship scheme, please contact us on 0845 241 2173.
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 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!
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!
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.
If you want to fundraise, like Jess, for Metabolic Support UK, please get in touch with Maggie on email@example.com, 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!
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.
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 firstname.lastname@example.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.
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!
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 email@example.com, 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!
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!
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.
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!
Metabolic Disorders Awareness Week is coming up soon! This year’s awareness week is taking place from Monday 2nd July to Sunday 8th July. One of the many things Metabolic Support UK have planned for the week is the Metabolic Mile, to help raise awareness about Inherited Metabolic Disorders and how they affect patients and families.
What Is It?
The Metabolic Mile is a fun challenge for you, your friends, family, colleagues and anyone you can encourage to get involved! During Metabolic Disorders Awareness Week, we’d love as many people possible to complete a mile, to show solidarity for Metabolic Support UK and those with Inherited Metabolic Disorders.
You can do your mile in any way you want: you could run it, walk it, swim it, skip it, or even space hopper it! In fact, the more creative the mile, the better! For the best photo of the most creative mile done, we’ll even be giving away a £100 Amazon voucher, and the chance to feature in our magazine!
You can choose to donate to take part and use our Metabolic Mile Just Giving page to donate to Metabolic Support UK: https://www.justgiving.com/campaigns/charity/climb/metabolicmile. Equally, you could take on the mile as a sponsored challenge. Your sponsors could donate via the Just Giving link above, or we can send you a sponsorship form if you prefer. Your donations will help us to continue providing our vital services for patients and families.
Regardless of whether you complete your mile forwards, backwards, crawling, as a sponsored event, or not, the taking part is what counts. By taking on the Metabolic Mile, you can help us raise awareness of who we are, what we do, and how we can help those with Inherited Metabolic Disorders.
Why Take Part?
Here at Metabolic Support UK, we work hard to support patients living with Inherited Metabolic Disorders and their families, and ensure their voices are heard in key processes to get the right access to treatment, care and support. This is an on-going and everyday battle; our common fight of which the general public isn’t always aware. However, during Metabolic Disorders Awareness Week, we can make this fight all the more known. By completing the Metabolic Mile and sharing photos of this, along with sharing your stories, we can help raise more awareness about Inherited Metabolic Diseases and how important support provided by organisations, like Metabolic Support UK, can be to patients and families. So, join in and help us spread the word!
How to Take Part?
First decide how you’re going to do your Metabolic Mile. Whether you run, walk, cycle, swim, bounce on a space hopper, walk backwards, row, skip, three-legged, in fancy-dress – the options are endless. If you need some more ideas or help with organising your mile, please get in touch!
Decide if you would like to fundraise for Metabolic Support UK when you do your Metabolic Mile. You could donate £5 to take part or get others to sponsor you to do your mile. All donations can be sent to our Metabolic Mile campaign page on the following link: https://www.justgiving.com/campaigns/charity/climb/metabolicmile. Or if you would prefer sponsorship forms, please let us know via the Metabolic Mile registration form or contact Maggie on firstname.lastname@example.org.
Do your mile and share your pictures via social media with #MetabolicMile and tag @MetabolicSupportUK in your post. In your post, please also share your story to help us raise awareness of what Inherited Metabolic Disorders are and how they can affect patients and families. If you don’t have any social media accounts, please send your pictures and stories to Maggie on email@example.com.
Thank you for considering doing the Metabolic Mile and supporting us during Metabolic Disorders Awareness Week. This is a very important week for our special community! Please join in the fun and help us spread the word!
For more information about the Metabolic Mile and how to get involved, please don’t hesitate to contact us and speak to Maggie about it.
We look forward to seeing the photos of your miles and hearing all about them! Good luck!
1st – 7th 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.