Kelly Jones is the mother of 2 year old Vinnie with SMA type 1. She acts as parent liaison and researcher who deals with Standards of Care and protocols for Type 1 children.
We are a UK community of people with spinal muscular atrophy (SMA) as well as parents of children with SMA who have joined hands to fight for wide and equitable access to treatment. We work entirely on a voluntary and non-profit basis, being driven by our committment to saving the lives of ourselves and of our dear ones.
TreatSMA, 85 Great Portland Street, First Floor, London W1W 7LT. TreatSMA is a charity registered with the Charity Commission for England and Wales, registration no. 1182610.