This campaign has now closed
In the UK, approximately 100 children are born with SMA each year. At any one time there are 1200 - 1500 children and adults with SMA. Some 1000 living with the condition and 500 bereaved families are in contact with our wider services. Our work provides a multifaceted package of support and funding
Categories
Beneficiaries
Situation
Approximately 1,500 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. People with types 2, 3 & 4 SMA can live long fulfilling lives but require a lot of practical help. Families require emotional & practical support but as it’s a rare condition, specialist help is required.
Solution
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 Peer Support network and by providing information ( accredited by NHS England) on: the condition, support, treatments and advocating for access for all those who want the treatments via our work with NICE, the NHS and pharmaceutical companies.
