Givinostat – Early Access Scheme – the fight continues for patients to gain access
Alex has been taking part in clinical trials most of his life – 9 years in fact. We are so grateful this has been the case, when Alex was diagnosed with Duchenne at 3 years old – there were no trials available for us to even consider. The purpose of taking part in clinical trials […]
Study paves the way for improved detection of heart disease in female carriers of DMD
A recent report from a study funded by partly by Alex’s Wish, in collaboration with Duchenne UK has improved understanding of early detection of heart muscle disease in female carriers of Duchenne muscular dystrophy (DMD), paving the way for further research. Women and girls who carry a mutated DMD gene (‘carriers’) can sometimes show mild symptoms of the […]
Important Update on Alex’s Clinical Trial
This is great news for the Duchenne community. We would like to share this news with all of our wonderful supporters. We’ve been saying for a while now that Alex is doing incredibly well. Now we know why this might be…….Alex has been taking part in a clinical trial study called Givinostat run by Italfarmaco […]
A busy year…
It’s been a while since I last wrote a blog, there’s lots been going on so I thought now would be a good time to update our supporters on what’s been happening. Summer of riding The summer has been mental, we’ve been busy running several fundraising events mainly cycling events and I even signed up […]