A Wish for Eben
Our son, Eben, was born in December 2018. After two and a half years of medical investigation, we were finally given a diagnosis of Ullrich Congenital Muscular Dystrophy.
The Chubb’s Crusade - Understanding Ullrich
Our daughter Josie was born in April 2017. When she was 2 years old, we started medical investigations which, over 2 years later, lead to her formal diagnosis of Ullrich Congenital Muscular Dystrophy in July 2021.
Super Sammy’s Fund
The purpose of this campaign is to raise funds for treatments and that vital cure. Also to raise awareness of muscle wasting conditions. We also want to think of his future and help raise funds for equipment that Sammy may require as he gets older and his needs change. Also to help him be more independent and reach his full potential.
Roarsome Rory’s Raisers
Roarsome Rory’s Raisers was set up by Mum Kerry Bentley for her son Rory. Rory was diagnosed with Becker muscular dystrophy in August 2020 and since then Kerry has thrown herself into fundraising and becoming one of MDUK’s Family Funds was the obvious next step.
Hugo's Research Fund
Hugos Research Fund has been set up to raise funds for research to find a cure for Beckers Muscular Dystrophy (BMD) and raise awareness of Muscular Dystrophy in Jersey.
Defenders of Dan
Daniel Edwards from Llanelli was born in March 2009. In May of that year, his parents discovered he had the condition, Duchenne muscular dystrophy. About 100 boys are born in the UK each year with Duchenne muscular dystrophy, a life-shortening muscle-wasting condition that causes muscles to weaken and waste over time, leading to increasing disability.
Nemaline Research Fund
Raising money to support scientific research projects for the rare neuromuscular disorder nemaline myopathy.