james brown
Race for Rhodri
Fundraising for Muscular Dystrophy UK
Story
In 2018 our beautiful and intelligent little boy had received a diagnosis of Duchenne muscular dystrophy which is a severe muscle wasting disease. Boys with this condition are generally wheelchair bound by their teens and life expectancy is in the late twenties. To say we were rocked to the core would be an understatement.
In coming to terms with this we found there are a myriad of potential treatments currently in clinical trial to slow down or even stop this advancement such as gene thereapy exesome delivery and chimeric cells.The technology to help may already be here but the funding is not! Therefore I am running to raise money for research and to help in my own way facilitate the clinical trials and treatments which will one day benefit all boys with DMD.
In consultation with MDUK the funding is now restricted and will go towards Gene therapy trials run by Genathon in UK. There have been some amazing preliminary clinical results in DMD boys in Gene therapy trials by sarepta theruputics
