News

The FSH Society International Research Congress was held in France, on 19-20 June 2019

Changing Places Awareness Day is on 19 July- find out how you can show your support.

Newly engaged couple, Evan & Abi are preparing to take on the Great North Run together in less than two months time. Evan will be pushing Abi the 13.1 mile route in her wheelchair.

With support from the Bupa UK Foundation, Trailblazers will be running three camps for young people aged 18 to 30 during the next 12 months.

NICE has responded to the joint letter which was sent by Muscular Dystrophy UK, SMA UK and TreatSMA last month in relation to how NICE and NHS England had communicated decision-m

Read here about two big groups who are doing just that. They’re facing their fears for their friends, and getting ready to jump out of a plane. Why not sign up and do the same?

Connor Colhoun, 22, was diagnosed with Duchenne when he was two. Now his fundraising efforts and positive attitude have earned him tea at the Palace.

Kal Hussamy from Cheshire takes on the Selkie henley Classic event - an upstream swim in the River Thames.

Clinical evidence has resulted in changes to the Spinraza MAA.

The registry is once again live. If you haven’t yet signed up to it, you can do so now, and if you have signed up for it previously, you can go in and update your records.