Inherited Metabolic Disorders Archives

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

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.

Asfotase alfa (Strensiq) Managed Access Agreement for treating Hypophosphatasia

Posted on February 11, 2019 by Maggie Allan

From August 2017, children and adults with a rare inherited metabolic bone disease called Hypophosphatasia (HPP) have been able to access a potentially life-enhancing drug called asfotase alfa (Strensiq).

The drug asfotase alfa was previously only recommended for use in babies by NICE in draft guidance, as evidence showed it could be life-saving. The Managed Access Agreement, alongside the new guidance in 2017, meant that access to the drug was broadened to infants, children, and adult patients with paediatric-onset HPP, who experience the most disabling symptoms and who are expected to benefit most from therapy. The agreement between, NICE, NHS England and Alexion runs for 5 years and enables time for further information and data to be collected.

Metabolic Support UK has been the patient organisation consultee in this process – representing people of all ages with HPP and working closely with Soft Bones UK. As part of this, we have held a consultation with those who have access to the drug via the Managed Access Agreement, and from this we have identified a clear need for some patient information to be developed to clarify what the terms of the agreement are and what they mean in reality for patients and their families.

With input from NICE, NHS England, Alexion and Soft Bones UK, we are pleased to be able to present our patient information on the asfotase alfa Managed Access Agreement for treating Hypophosphatasia. We would like to thank all those who have taken the time to contribute feedback to us regarding the drug and the Managed Access Agreement both to Metabolic Support UK and Soft Bones UK. We will continue to collaborate to ensure that we continue to represent the voices of those we support.

You can download the document here: Managed Access Agreement for HPP v1.1

February Guest Post: Nutricia Metabolics

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

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.

Metabolic Support UK attend meeting for the integration of specialised services in hospitals

Posted on February 7, 2019 by Maggie Allan

Yesterday, our Chief Executive, Lindsay Weaver, attended the Specialised Healthcare Alliance quarterly meeting to hear Jon Stewart, Director of Specialised Commissioning, talk about plans to integrate more specialised services at a local level and potential changes to the Clinical Reference Groups.

Hear Lindsay’s thoughts on how these changes might impact patients and how Metabolic Support UK plan to support the NHS with the challenges they face.

“Yesterday, I attended the Specialist Healthcare Alliance quarterly meeting to hear Jon Stewart, Director of Specialised Commissioning, talk about plans to integrate more specialised services at a local level.

As a PPV member of the Clinical Reference Group for Metabolic, I was also keen to understand how the new proposed changes to CRGs would impact our level of engagement and representation of patient experience, needed to inform the way specialised services are commissioned and delivered. This is so important to Metabolic Support UK, given the changes being proposed.

My initial concern at the prospect of localising specialist services was that usually, in my experience, with delegation down away from national commissioning and towards CCG commissioning, there is more variability. This can be a good thing in many areas but with more specialist services, this can often mean that areas with good expertise see better patient outcomes compared to areas with less expertise. The issue is that expertise for some conditions is limited in areas of the country, especially in primary and secondary, which is usually an opportunity to prevent crisis, if treated effectively.

It’s reassuring to know that this approach will take disorders, which clearly need specialist care, into consideration and that these will remain in expert centres. But ongoing treatment might be localised, and this presents a challenge for our rarer disorders in ensuring that local services understand the patient’s complex needs.

The CRGs are Metabolic Support UK’s main vehicle for collaboration with Clinicians and where we can support NHS England by providing clinical data alongside patient experience and feedback to inform changes. The hope is that we will be given the opportunity to offer views on the proposed changes, but I also remain reassured after today that the fundamental principles of the CRGs will not change.

Metabolic Support UK is looking forward to working with NHS England through the CRG network and discussing how we can provide patient experience in a meaningful way to help with some of the challenges and decisions that will arise as part of the current Metabolic Services review and the future plans of the NHS. We are especially interested in ensuring that quality data is recorded to measure the patient experience particularly with the localising agenda.”

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

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

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!

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!

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!

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.

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!

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

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

**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!

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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.