Advocacy Lead

About SMA UK and the Role

Spinal Muscular Atrophy UK (SMA UK) is a national charity committed to providing the best possible information and support to those impacted by this rare and complex condition. We advocate strongly for access to drug treatments and better services, and raise public awareness of the condition.

If you’re looking to make a major difference to the lives of adults and families living with SMA, this high-profile role that we've created could be the new challenge you‘ve been waiting for. We are keen to talk to a wide range of candidates with different backgrounds and experiences, so please don’t hesitate to follow up and make contact if you have a passion to improve the lives of families affected by SMA.

Reporting directly to the Chief Executive, the role covers:

  • SMA-specific advocacy

Consulting with the SMA community on the needs and views of people who have SMA and their families about access to drug treatments.  Collating these views and advocating to health regulatory authorities, pharmaceutical companies and clinicians; preparing written submissions, attending meetings, preparing and giving presentations, working with partner organisations and alliances where appropriate, preparing summaries and updates for the information production team to add to the website and our social media news.

  • Pan (neuro)-disability advocacy

Consulting with the SMA community on the needs and views of people who have SMA and their families about access to better social care and health services and more accessible education, work and housing. Collating these views and representing them to the alliances and partners who have resources to take these issues forward in appropriate policy forums and arenas; attending alliance meetings, providing written and verbal input; supporting members of the community to speak up alongside.

This advocacy role requires being adept at liaising with and representing the organisation as needed in broadcast, digital and print media and engaging with members of the public.

Download full job description


Depending on experience, a full-time position would attract £32 – 37,500 per annum.  


SMA UK’s office is in Stratford-upon-Avon with staff living within commuting distance. Volunteers are UK-wide. The charity has a good IT infrastructure. Working from home is possible but occasional travel to the office and other locations will be required.


We are a disability-friendly, flexible employer and encourage you to contact our CEO Angela on: for an initial chat.

Or apply now by sending the following information to

  • the hours you would wish to work.
  • a personal statement (max 2 sides of A4) telling us, why you are the right person for this role, and how your background, skills and experience combine with the personal determination and professionalism needed to represent our community and our charity.
  • this job is subject to satisfactory employment references and a DBS check.
  • Applications should reach us by Monday 1st November.
  • Initial interviews will be held remotely in early November. 

You can find more information about what we do and who we are by following the links below:

Our Vision, mission and Strategy

Our Advocacy work to date

Our Team 

Our Trustees and Governance