Our Team

Page last updated: 17th November 2020

Meet our Team:

  • Support Services
  • Community Connections
  • Research Information 
  • Fundraising
  • Management & Administration

Support Services

We have 8 paid staff (6 full-time equivalents) who come from a variety of health, education and social care professional backgrounds. Between them, they have extensive experience of working with people affected by SMA and of other disability information, support and advocacy work. They: provide phone, email and other support; keep our website, information and Living with SMA resources up-to-date; coordinate our 'Connect with Others' services; and, with the Community and partners, advocate for access to treatments. When possible, team members with an ‘Outreach Worker’ brief make home visits all over the country and also keep in touch with people by phone and email. 

We also engage with many adults and young people who have SMA both as volunteers and paid facilitators / consultants. In particular, we work with Martyn Sibley who leads the Community Connections Team (click here to meet the Community Connections Team) and facilitates the Adults' Network. Our 'Connect with Others' volunteer networks also include family members affected by SMA. Many clinicians, members of the SMA Community, and others help us write and review our information resources.

Research Information Team

You can read more about this small team, here.

Fundraising Team  

Our absolutely essential Fundraising Team bring in the money that enables us to deliver our services and fund research-related initiatives. We have 4 staff (3.25 FTE) who apply for funding from Trusts and support individuals and organisations fundraising on behalf of the charity.  

Management and Administration

Our Support Team and Fundraising Managers work together to oversee the day to day running of the organisation. They are accountable to and report to our volunteer Board of Trustees. They are supported in this by part-time contractors who help us out with operational and financial matters.

Together, and with your support, we: work hard to deliver services that you ask for; keep external communications flowing; organise events for the community and bring in the charitable income needed to run our services and support research-related initiatives.