James' fundraiser for the MPS Society - TCS London Marathon 2025

James Edwards is raising money for The Society For Mucopolysaccharide Diseases (The MPS Society)
£2,024
raised of £2,000 target

London Marathon 2025 · 27 April 2025 · Start fundraising for this event

The MPS Society's 2025 team of runners will be raising money to help us support our members who are affected by MPS, Fabry and related lysosomal diseases by taking part in the TCS London Marathon on 27th April 2025.

Story

Freddie is my absolute favourite little man, and one of the few people I'd be willing to put myself through the pain of running 26.2 miles for (especially being the opposite of a runner, having never run a 5k before this year...)

Freddie was born with MPS1, an extremely rare genetic disorder, known as Hurler syndrome, affecting 1 in 100,000 babies. It's caused by a deficiency of the enzyme alpha-L-iduronidase, which is crucial for breaking down complex sugars in the body. Without it, these sugars accumulate in various tissues, leading to a range of health challenges.

Despite this, Freddie is the most infectiously happy little chap, always smiling and laughing, and often blabbering away as he loves to do. His resilience and spirit are truly inspiring - and he warms the heart of anyone who's lucky enough to spend time with him. His journey with MPS1 so far has been filled with both hope and challenges, but he continues to light up every room with his boundless energy.

MPS1 is a progressive disease that can impact many parts of the body, including the heart, bones, joints, respiratory system, and central nervous system. Symptoms can range from mild to severe and often include developmental delays, difficulty breathing, vision and hearing loss, and joint stiffness. Early diagnosis and intervention are critical in managing the symptoms and improving quality of life.

The MPS Society provides vital support services, funds critical research, and advocates for better treatments and a cure for these devastating conditions. By raising funds for the MPS Society, we can help ensure that children like Freddie receive the medical care, therapies, and support they need.

Your support can make a tremendous difference in Freddie's life and the lives of many other children facing similar challenges. Donations will go directly to the MPS Society to help fund their essential work, including medical treatments, therapies, and research initiatives. Every donation, no matter how small, brings us one step closer to making a positive impact.

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Donation summary

Total
£2,023.44
+ £227.50 Gift Aid
Online
£1,523.44
Offline
£500.00

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