Information

Please click here to read the latest edition of our SMA Matters newsletter - Spring 2022.

Our office will be closed from 4pm on Thursday 14th April and will re-open from 8.30am on Tuesday 19th April. Find out more about where to find information and support during this time.

Motion Content Group, with thinkBIGGER!, are offering an exciting new Researcher Training Programme aimed at new entrants with less than 3 months experience in TV. Applications close Friday 22nd April at 12pm.

If you’re an adult who has SMA or parent of a child who has SMA, it’s essential that your feedback about the impact of your SMA, and how any treatment may be changing this, is captured. When NICE reviews the MAAs and considers whether to recommend continued funding for nusinersen and risdiplam, this will be part of the evidence. Sign up for the SMA Patient Registry today and take part!

The Pathfinders Neuromuscular Alliance are planning to run three online training conferences for PAs, for which registration will open soon. They're keen to ensure that these online training courses are led by people with muscle-weakening conditions and so are looking for paid freelance hosts and facilitators.

Living with a serious medical condition can affect emotional and spiritual needs in lots of different ways. Researchers are doing a study which will develop recommendations for the NHS on how best to meet these needs. One of the groups involved in the project are parents of children (0-18 years) with SMA Type 1 or 2.