Spinal Muscular Atrophy UK

Supporting the UK SMA Community into the 2020's

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

Donations open 12:00 PM, 3 December 2019 to 12:00 PM, 10 December 2019

open_in_new https://smauk.org.uk/

Registered Charity in England and Wales (1106815)

Campaign target

£26,000

Amount raised

£31,755

Donations

117

Championed by Clive & Sylvia Richards Charity

  • There is no way I would have coped with this process without Outreach Support from SMA Support UK who although explained to me that I needed to get expertise from organisations such as CAB and the Community Law Service (and supported me to meet with them) agreed to support me all they could.

    — Gurdeep, adult helped to appeal cuts to his benefits

  • We know that we are only in the position of receiving such amazing support through such dark and difficult times because of the kindness of people who have fundraised before us. The new national SMA charity needs your support more than ever before to continue helping families like mine.

    — Amy, mum of Zac

  • SMA UK has given us so much support from the very beginning when our world fell apart. They were a shoulder to cry on and an ear to listen, offering words of encouragement and hope. From a dark tunnel they were our shining light leading us back into a new bright future

    — Ally, mum of Bobby age 8

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.