A very difficult story for two families with close bond

In the weekend’s Daily Mail, Emily (Emily Reuben, co-founder alongside Alex of our partners charity Duchenne UK) has told a very difficult story for both of us. We are very lucky that Jack is on Givinostat but it preys heavily on our minds that so many are not who could benefit.

The drug is now approved in the US by the FDA. A decision the MHRA could mirror under the new international recognition procedure. There is a way forward and we will work our hardest to make it happen 👊

Jack was given pioneering drink to beat muscle wasting disease and can still stand. His best friend Eli didn't get the drug and now he is permanently in a wheelchair. Their contrasting stories prove new treatment works, so why is NHS rollout at risk?

Read the full story on the Daily Mail