Story
A few years ago, I was diagnosed with GNE Myopathy, a rare genetic neuromuscular disorder that affects about one in a million people. This condition causes progressive muscle weakness and wasting, starting in the legs during young adulthood and advancing to impact muscles across the body. Over time, it leads to significant physical challenges, including loss of mobility and increased disability. Due to its rarity, GNE Myopathy is often misunderstood, resulting in delayed diagnoses and limited support for those affected.
For my family and me, fundraising for Muscular Dystrophy UK (MDUK) is about more than raising awareness - it’s about hope. I am the first in my family to face this condition and have experienced firsthand the uncertainty, isolation and challenges it brings. Supporting MDUK matters because their work could lead to breakthroughs in research, better treatments and improved support systems, not only for me but for others navigating similar journeys.
This fundraiser supports MDUK’s vital efforts to advance research, provide resources for patients, and create a supportive environment for individuals and families affected by muscle-wasting conditions.