Next Pyjamas
We couldn’t believe it when Next approached us to suggest collaborating on a product to celebrate Duchenne Awareness Day! After lots of fun discussions it was decided that Next would develop boys pyjamas with racing cars on, representing Alex’s love of motor racing. They went on sale in September to fall in line with Duchenne […]
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 […]
Fill our Hearts with Hope
February is the month of LOVE, so what a perfect time to launch our HEART campaign….. Our heart muscles need dystrophin to function efficiently. In DMD, a lack of dystrophin means that heart muscles weaken over time. Heart cells are replaced by scar and fatty tissue, which leads to a type of heart muscle disease called […]
Alex’s Wish invests into a new project to improve diet and nutrition for people with DMD
We are pleased to announce that we have funded £50,864 towards the funding of a project to drive better care for nutrition and weight management in Duchenne muscular dystrophy (DMD). The project is led by Dr Jarod Wong, consultant paediatric endocrinologist at the Royal Hospital for Children, Glasgow. The aim is to develop guidance and […]