Spinal Muscular Atrophy UK

Supporting the SMA Community

We are raising funds to support anyone affected by Spinal Muscular Atrophy in the UK. COVID-19 has seen a dramatic decrease in the charity's income and to maintain our vital services, we're looking to raise funds through this year's Big Give Christmas Challenge.

history Campaign has now closed

It ran from 12:00 PM, 1 December 2020 to 12:00 PM, 8 December 2020

Registered Charity in England and Wales (1106815)

open_in_new https://smauk.org.uk/
Check mark Match funded

Campaign target

£20,000

Amount raised

£22,854

Donations

161

Championed by The Hospital Saturday Fund

    Categories

  • Health/WellbeingHealth/Wellbeing
  • Information/AdviceInformation/Advice
  • Medical ResearchMedical Research

    Helping

  • Children (3-18)Children (3-18)
  • People With DisabilitiesPeople With Disabilities
  • Young People (18-30)Young People (18-30)

Location

United Kingdom

Situation

Spinal Muscular Atrophy (SMA) is a rare, genetically inherited neuromuscular condition causing progressive muscle weakness and loss of movement due to muscle wasting (atrophy). This may affect crawling and walking ability, arm, head and neck movement, breathing and swallowing. There are different forms of SMA and a wide spectrum of how severely children, young people and adults are affected. As a rare condition, support tailored to each individual.

Solution

SMA UK provides information & support to help negotiate the complex & challenging world of health & disability services, access to school &, in time, further education, work and independent living. This may be in the form of: • The Outreach Service that provides face-face, email & phone support • By funding research initiatives including advancing the understanding of the complexities of SMA • By facilitating opportunities for people with SMA to meet, share experiences & build support networks

  • “She suffered so much but her courage still brings a tear to my eye. A few days short of her six month milestone our little angel passes away peacefully in her mummy's arms with her daddy holding them both. SMA UK has become our family.”

    — Father of a baby with SMA Type 1

  • 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 bright future.

    — Mother of a child with SMA Type 3

  • The weekend was fantastic, and we wanted to say a huge thanks to you and the whole team at SMA UK for organising such a brilliant weekend. We met some great people and we learnt a lot from the presentations we saw. It feels like we're part of a real community now.

    — Father of a four year old with SMA type 2

  • So many happy faces from adults and children who must have left today feeling so much more positive about the future. There were, I know, lots of new friendships made which is so important for sharing information etc.

    — Grandmother of a teenager with SMA Type 2