Videos: Self Management of Rare Conditions
Managing Spinal Muscular Atrophy
Jon Fleming shares his story of managing Spinal Muscular Atrophy Type II. Spinal Muscular Atrophy affects 1 in every 6-10'000 people:
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More Information
Jennifer Trust for Spinal Muscular Atrophy:
Helpline: 0800 975 3100(families only)
Office: 01789 267520
Email:
The Trust is a Registered Charity in England and Wales No. 1106815, established in 1985. It offers support, information and contact with other families. The Trust has two outreach workers who can visit newly diagnosed families at home and a youth worker who supports teenagers and young adults. It funds and promotes research into the causes, treatment and management of SMA. The Trust publishes a quarterly newsletter, has a range of information available and can provide multi-sensory toy packs for babies diagnosed with Type I SMA.