how you can help
We are working with Muscular Dystrophy UK, the SMA Trust, and the family-led campaign group TreatSMA. You can help us with our efforts to progress access to nusinersen in the UK.
Write to key decision makers
If you live in England, you can write to your MP adding your own experience to our MP template letter. This covers both the Expanded Access Programme (EAP) for all eligible children with SMA Type 1 and longer term access to nusinersen. You can also write about access to the EAP to the Chief Executive of NHS England using this template letter.
Our focus in the devolved nations, where families are managing to access the EAP, is to urge decision-makers to hasten access to the drug more broadly.
- If you live in Scotland, you can write to your MSP using this template letter.
- If you live in Wales, you can write to your AM using this template letter.
- If you live in Northern Ireland, you can write to your MLA using this template letter.
You can read more about the NICE process and what has happened thus far here as well as what happens for the rest of the UK.