Spinal Muscular Atrophy UK
Spinal Muscular Atrophy Support UK is a UK-wide national charity which informs, supports and empowers families and individuals affected by all forms of SMA and raises awareness of the condition. They also fund and support the research community addressing the causes, treatment and management of SMA.
Spinal Muscular Atrophy Support UK is the name recently given to the charity but their work has been on-going since 1985. They were established by a mother whose baby died aged 7 months from Spinal Muscular Atrophy Type 1, Anita Macaulay. When Anita’s daughter Jennifer was diagnosed, Anita was told the condition was so rare there were probably only a handful of other parents in Britain who had experience of it, there was no research being made into the SMA and there was no organisation out there to offer her support. At Jennifer’s funeral, Anita vowed to change that. She set up the ‘Jennifer Trust for Spinal Muscular Atrophy’ to offer support and hope to other families affected by the different types of SMA. Her aim was to make sure no one had a similar experience to her. From Anita’s commitment, The Jennifer Trust grew to become the leading charity for Spinal Muscular Atrophy support in the UK offering a very personal service to families and individuals affected by SMA.