Metabolic Matters (Issue 9)

SEPTEMBER 2022 YOUR MONTHLY MSUK MAGAZINE

Metabolic Matters

london marathon special RUN FOR RARE

CONTENTS

The London Marathon (Page 4) Donation to #TeamMSUK (Page 5) Meet #TeamMSUK (Pages 67) Stronger together: MPS Society (Pages 8-9) Leukodystrophy awareness month (Pages 10-11) Our family fun day (Page 12) Get involved (Page 13)

The London Marathon Charity at the London Marathon The London Marathon is an annual marathon held in London, United Kingdom. Founded by athletes Chris Brasher and John Disley in 1981.

There is a significant charity running aspect to the marathon, with participants helping to raise over £1 billion for different charities since its founding, including £66.4 million at the 2019 London Marathon which was the highest amount for a single-day fund-raising event

The London Marathon and Metabolic Support UK The London Marathon is our biggest community fundraiser of the year and we put a lot of effort into recruiting runners and guiding them along their journey to the London Marathon. This year we have an amazing 14 runners taking place in the event, all with a goal of raising £1500 for Metabolic Support UK. If you're in a position to help, please donate to our runners donation pages at the links attached on the following page.

Your support means the world to people living with Inherited Metabolic Disorders and allows us to continue work towards a better life for anyone affected.

Donate to #TeamMSUK Dave Eyre

https://bit.ly/3KPZ0tj

Darren Wilding

https://tinyurl.com/4vbxtvjp

Andy Moore

https://bit.ly/3RqWYni

Lowri Pryce

https://bit.ly/3ORrogV

Issy Hargreaves

https://bit.ly/3P5jYGU

Robyn Hill

https://bit.ly/3tWOOt6

Sean Barrie Rafton

https://bit.ly/3KLIF8K

Scott Mason

https://tinyurl.com/46tma2ns

Luke Smith

https://bit.ly/3nPZFBx

Thi Anh Thu PHAM ABDON

https://bit.ly/3x57wQQ

Wayne Clark

https://bit.ly/3cK0BVH

Lucy Parkin

https://bit.ly/3xLdJBv

Sian Davies

https://bit.ly/3SgnUpX

Use #TeamMSUK across social media on the 2nd October to support our team

Meet #TeamMSUK An introduction to some of our runners Issy Hargreaves "Hi, my name is Issy and I’m from Exeter! I am 22 and have just graduated from university! Running the London Marathon has always been a dream of mine and with a family friend tragically losing their life to an inherited metabolic disorder, I felt like it was only right to run for this incredible charity.

I am determined to raise as much money as I can for Metabolic Support Uk to help them continue with their inspirational and life changing work they do.

I aim to complete the marathon under 5 hours. "

Dave Eyre ''I am running the 2022 London Marathon to raise as much awareness and money as I can for Metabolic Support UK. I have to say that it's only since I signed up have I truly understood what a Metabolic disorder is and what this means for those who live with such disorders.

I've also come to understand the magnificent support that Metabolic Support provide to both families and hope that by running I can contribute, albeit in a really small way, for Metabolic Support to continue providing this support.

In terms of time, I'm aiming for no more than 3hrs 45mins."

Meet #TeamMSUK Darren Wilding Darren is a long term supporter of Metabolic Support UK, first engaging with the charity back when we were called CLIMB due to his son being diagnosed with MCADD. In his fundraising efforts, Darren has ran The Worcester 10k, The Cheltenham Running Festival 10k, The Worcester City Half Marathon and has trained extremely hard including a 25k solo run this month!

Sian Davies "When I was contacted by Adrian a couple of months ago about running London Marathon, a dream of mine for ages, I wasn’t sure if I had enough time to train properly and I’d not long completed a charity walk where friends/family had been very generous.

Then I found out it was to raise money for Metabolic Support UK, a charity that had supported Adrian’s daughter who was diagnosed aged 4 with a rare metabolic disease and sadly passed away aged 8. I couldn’t resist the chance to try and help such an important charity in honour of such a beautiful girl, taken too soon."

Stronger together: MPS Society Background The MPS Society (Society for Mucopolysaccharide Diseases) was first established by Christine Lavery in 1982. They are the only registered charity in the UK which focuses on MPS (Mucopolysaccharide), Fabry and related lysosomal diseases.

Mucopolysaccharide (MPS) diseases are a family of rare, lifelimiting lysosomal diseases that can affect both children and adults. For people with MPS diseases, there is not enough of a particular enzyme to break down used mucopolysaccharides – long chains of sugar molecules, which means they build up and store in the cells in the body which causes progressive damage.

There is no cure and normally, children don’t live beyond adulthood.

The MPS Society’s Wood of Remembrance and Hope In 1993, to mark the 10th anniversary of the Society a year previously, they were granted a license and an inaugural planting took place of 150 oak saplings in Sherwood Forest in Nottinghamshire that were cloned from the forest’s Great Oak. The saplings were planted by MPS families.

The Rt Hon Lord Michael Howard, the Secretary of State for the Environment, at the time, planted the first oak in memory of Simon Lavery, Christine's son, who had MPS. Christine, along with her husband Robin, established the MPS Society shortly after Simon passed away.

The Remembrance Wood (formerly known as Childhood Wood) has since become a lasting memorial to children and adults who have lost their lives to MPS, Fabry or a related lysosomal disease and continues to grow and flourish every year.

The MPS Society’s Wood of Remembrance and Hope

They hold planting days where bereaved families are allowed to plant a tree in memory of the child or children that they have lost. We also organise Family Remembrance Days where bereaved families can visit the Remembrance Wood with the support of the charity.

Memory boards feature the names of each individual that have been commemorated by a tree along with a short message of remembrance from their family.

Alongside these memory boards is an interpretation board which informs members of the general public of the Wood’s concept and purpose. Members of the public are also encouraged to take time to enjoy all the delights that the Wood has to offer.

On 24 September, the MPS Society is hosting its first planting since the COVID19 pandemic at the newly named ‘Wood of Remembrance and Hope’. Staff members, families and volunteers will attend to witness this special day

Leukodystrophy awareness month September is Leukodystrophy Awareness Month, providing an opportunity to spread awareness of Leukodystrophy. Leukodystrophies are rare, genetic disorders primarily affecting the white matter of the brain and spinal cord. They are usually degenerative and affect people of all ages and ethnic backgrounds, most notably children. There are over 100 types of leukodystrophy, including some so rare they only affect one or two individuals.

This September we wanted to focus on our community members' experiences of living with leukodystrophy, through a social media campaign. We asked our community to get involved in a number of activities including sharing about their lives living with leukodystrophy based on different themes and turning September blue by adding our frame to their social media profile pictures. You can head to our social media channels to see what’s been happening this September: Facebook, Twitter, Instagram, LinkedIn It would be truly appreciated if you could share our posts, it may nearly be the end of September but as a charity we strive to raise awareness of leukodystrophy all year round 💙 This September has been a huge success thanks to our wonderful community members. We have been sharing some of their personal stories throughout the month.

If you’d like to read their stories, please visit: https://www.alextlc.org/news/personal-stories/

Our family fun day The Metabolic Support UK Team are bringing the IMD community together once again with a fun filled day at Chester Zoo. It has been a long time since we last gathered in person and what better way to reconnect than at one of the UK's biggest attractions!

With 35,000 animals and 128 acres of zoological gardens, there is plenty to see and do for all ages.

When you feel like taking a break you will find a free hot buffet lunch and the MSUK team waiting for you at the Oakfield, situated within the zoo grounds.

After lunch pop in and chat to the MSUK team for 1:1 advice or support and to take part in the many fun and engaging activities we have on offer.

Spaces are limited therefore register now to reserve your place, it's an event you won't want to miss!

Register here

How to support us Metabolic Support UK couldn't exist without you and we aim to do even more in the future to ensure anyone affected by an Inherited Metabolic Disorder is seen, heard and supported.

To enable us to keep working for you why not: Donate Fundraise Volunteer