Alex’s Wish helps to raise vital funds to fund new clinical trials. And our very own Alex is helping in the best way he can – by taking part in clinical trials himself. He’s proud to do this, and he genuinely feels that its his way of helping bring new treatments to boys with Duchenne. We are so proud of how well he copes with his condition.
The first trial Alex took part in was the Pfizer Anti-Myostatin drug at Newcastle Royal Infirmary Hospital. We attended monthly visits and Alex received a monthly drug infusion with the hope that his drug will help build muscle. He has regular CT scans, physiotherapy, bone and muscle scans to check how things are going. Alex was the first boy in the UK to receive the drug. Unfortunately two years ago we received the devastating news that this trial was working as they’d hoped and the trial stopped.
Since then, Alex has started a new clinical trial Givinostat with Italfarmaco to help repair damaged muscle fibres. This trial is ongoing and early results are showing this drug to have positive effects on boys with Duchenne.