A diagnosis of spinal muscular atrophy can be devastating. Many families have not heard of the condition & require practical and emotional support to deal with what the future holds. We provide this free support to everyone in the UK who would like it.
It ran from 12:00 PM, 27 November 2018 to 12:00 PM, 4 December 2018
Registered Charity in England and Wales (1106815)
Approximately 2,500 people in the UK are living with SMA , a rare genetically inherited neuromuscular condition that can affect movement and breathing. There are 4 main types of SMA with type 1 being the most common & severe. Babies with type 1 rarely survive beyond their 2nd birthday without treatment or intervention. People with types 2, 3 & 4 SMA can live long fulfilling lives but require a lot of practical help. Families require emotional & practical support for this rare condition.
We will provide practical and emotional support through our outreach workers who visit families in their homes, by running social events for people to meet other families affected by SMA, by continuing our Volunteer Peer Support network and by providing information on treatments and advocating for access for all those who want the treatments via our work with the NHS & SMC and pharmaceutical companies.
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