Page last updated: 22nd April 2020
We employ 12 staff (10.6 full-time equivalents (FTEs) – with 1.2 currently on maternity leave; 2.7 of these FTEs work in Fundraising) and 3 contractors (up to 1.0 FTE).
Our team members 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 and email support, keep our website and information guides up-to-date and coordinate our Shared Experiences services. 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.
Our Support Services Team Manager leads the organisation’s work on advocacy for access to treatments.
Research Information Team
You can read more about this small team, here.
Our fundraising team consists of a Fundraising Administrator, Fundraising Officer - Trusts, Fundraising Communications Officer, and a Fundraising Manager. The team apply for funding and support individuals and organisations fundraising on behalf of the charity.
Management and Administration
Our Support Services and Fundraising Managers work together to oversee the day to day running of the organisation. They are accountable to and report to our Board of Trustees. They are supported in this by contractors who work on 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; support research-related initiatives.