How You Can Help

Last updated 14th February 2019.

We are working with Muscular Dystrophy UK (MDUK) and the family-led campaign group, TreatSMA. 

If you live in England, Wales, or Northern Ireland:

We now know NICE is holding its third committee meeting on March 6th 2019. The community’s patient and clinical representatives are preparing for this as are SMA UK, MDUK and the campaign group, TreatSMA.

This is a critical time. Muscular Dystrophy UK and SMA UK have jointly arranged a 'drop in event for MPs' which will be hosted by Mary Glindon MP:

  • Monday 25th February: 3.30pm to 5.30pm
  • Grimond Room, Portcullis House, House of Commons

Parents and adults will be at the event to talk to MPs about their experiences of living with SMA and will be joined by clinicians to talk about the importance of urgent access to nusinersen. They will be outlining the actions MPs can take to show their support and raise the matter further. As space is tight we regret that have had to limit who will be there from the SMA Community.

You can help by asking your MP to attend. To do so, please add any details you wish to about your / your child’s SMA / any previous correspondence you have had, using this letter.

You can find details of your MP here.

If you live in Scotland:

To find out about the great progress there, please go here

Wherever you live in the UK:

You can follow and support MDUK’s ‘Fasttrack' campaign which includes access to nusinersen (Spinraza) and watch out for further news of Genetic Alliance UK's 'Resetting the Model Project'. 

To keep up to date with progress and developments you can follow us on Facebook and Twitter and sign up to receive our monthly E-news updates.