Our family funds

We have set up The Chubb’s Crusade - Understanding Ullrich to raise awareness and funds for Muscular Dystrophy UK’s Ullrich CMD Appeal after our daughter Josie was formally diagnosed with the condition in July 2021

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 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.

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.

Raising money to support scientific research projects for the rare neuromuscular disorder nemaline myopathy.

Benjamin Edwards was born in December 2016. After 7 years of trying to conceive we finally had our bundle of joy. Ben is so gentle, kind, caring and an absolute joy to be around. He is our absolute world.

In September 2017, not long after his third birthday, it was confirmed by Doctor Kulshrestha and her team at the Robert Jones and Agnes Hunt Orthopaedic Hospital that Ruairi had Duchenne muscular dystrophy a severe and life limiting muscle-wasting condition.