Spinal Muscular Atrophy Support UK is both a Registered Charity and a Company Limited by Guarantee. It is governed by a Board of Trustees who are also directors of the company and accountable under both charitable and company law.

Trustees are elected by the members of SMA Support UK along with the Board. This is for a three year term. Trustees are eligible to stand for a further three year term but after two terms in office must stand down for at least one year before being eligible for re-election. The Chairman and Treasurer are the exception to this rule.

Trustees meet face to face regularly for full board meetings and also meet by telephone conferencing.

The Board of Trustees has a high proportion of user representation. We have trustees with a personal interest in SMA as a parent or other relative as well as adults with SMA. This helps to ensure the organisation meets the needs of its diverse membership. We also try to ensure that we have trustees who bring a range of business skills and experience to the organisation.