On July 13th 2024 I am running Race to The Stones 100KM ultra and fundraising for Muscular Dystrophy, specifically for the Ullrich CMD appeal. My good friends James and Charlotte have a 7-year-old daughter, Josie who was diagnosed with Ullrich Congenital Muscular Dystrophy at age 3. This a rare muscle wasting disease, which is progressive, has no cure and limits everything she can do physically.

Josie is a bright, fun-loving little girl who is very sociable. She loves nature and to be outside and to simply be involved in everything. Josie's condition means she cannot run, jump, climb stairs or transition from seated to standing. The condition reaches further than just the legs, it also means Josie has weak upper body strength affecting her arms, torso and neck. Everyday tasks are significantly more difficult if not impossible for Josie without adult support. She must wear knee high orthoses both night and day and has to take part in a regimented lengthy stretching routine every night to try and prevent progression of the condition. Josie has a wheelchair because she finds it difficult to walk for any distance or length of time as her body fatigues.

As the condition progresses, significant equipment and adaptations will be needed for Josie to take part in everyday living and aid her independence.

I hope to raise some money, but also to raise awareness of this condition so that the people around the gorgeous Josie can help make life that little bit easier for her.

You can read more about the condition and its effects on the MDUK website.