Spinal Muscular Atrophy UK

Supporting Families Affected by SMA

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.

history Campaign has now closed

It ran from 12:00 PM, 27 November 2018 to 12:00 PM, 4 December 2018

open_in_new https://smauk.org.uk/

Registered Charity in England and Wales (1106815)

Check mark Match funded

Campaign target

£10,000

Amount raised

£20,385

Donations

87

    Category

    Helping

Location

Situation

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.

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 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.