Our Advocacy Priorities

We respond to the top priorities for the SMA Community:

Personal Assistant (PA) Crisis #ItsNotJustCare

Personal Assistant (PA) Crisis #ItsNotJustCare

Many in the SMA community are telling us that they’re struggling to recruit PAs. Together with other organisations we want to push this issue higher up the political arena.

Access to Schools and Nurseries

Access to Schools and Nurseries

Now that more children benefiting from drug treatments reaching pre-school and school age, we’re hearing that many parents are facing a range of issues.

Newborn Screening for SMA

Newborn Screening for SMA

If, at birth, babies who have SMA were given one of the treatments now available through the NHS, they could have longer and healthier lives.

Our Advocacy for Access to Treatments for SMA

Our Advocacy for Access to Treatments for SMA

Since Autumn 2016, we have invested a huge amount of time and energy to advocate for access to all three treatments (nusinersen, zolgensma and risdiplam) in the UK, as well as joining with others to voice the need for reform of regulatory systems and processes.

Our Advocacy for Access to Better Services & Care

Our Advocacy for Access to Better Services & Care

We work with individuals as well as responding to public policy that impacts on the SMA Community. Find out more about what we have been doing towards this.