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Project information

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.

February 2019 - February 2020

Charity information: Spinal Muscular Atrophy UK

Spinal Muscular Atrophy UK logo
  • Need


    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.

  • Aims

    Aim 1

    Deliver the outreach service


    » Visit families in their own homes to offer emotional support and practical help
    » Follow up home visits with support by phone and email

    What success will look like

    50 visits to families. 2500 contacts made by phone and email.

    Aim 2

    Provide information on current research and treatments for spinal muscular atrophy.


    » Update website and social media with new information.
    » Liaise with the NHS and pharmaceutical companies to gather the latest information and advocate on behalf of our beneficiaries.
    » Write and produce our biannual newsletter 'Inspirations' and send monthly updates via e-news

    What success will look like

    Website up to date. 3 social media posts relevant to SMA community each week. 2 newsletters and 12 e-news per year. Regular meetings with the NHS, pharmaceuticals and MP's.

    Aim 3

    Provide peer to peer support service


    » Put newly diagnosed families in touch with Peer Support Volunteers who have themselves experienced SMA
    » Publish stories for 'SMA Voices' to enable beneficiaries to share life stories
    » Run the 'Ask a Question' service which puts questions from people affected by SMA or caring for someone with SMA to our Shared Experiences Network.

    What success will look like

    Respond to all requests for a Peer Support Volunteer and match with appropriate family (approximately 20 per year). Publish 6 SMA voices per year.

  • Impact


    The long term change from our project is families being able to cope better emotionally with the bereavement of a child, or families are better equipped to look after a severely disabled child. This is demonstrated by feedback received on an ad hoc basis and more formerly through surveys. We hope our work with the NHS will bring about treatments and improvements in the quality of life for babies and children with SMA as new treatments become available.


    This is a low risk project but with any project, the main risk would be any of the outreach service staff leaving the charity. This risk is minimised by regularly sharing information, ensuring our database is kept up to date with all our communications with families and that no one member of staff is solely responsible and knowledgeable for a single project aim.


    Donors who consent to being contacted by the charity will receive our monthly e-news which provides updates on the project and/or our biannual newsletters (depending on their preferences). They will also be individually thanked for their support.

  • Budget

    Budget - Project Cost: £104,000

    Loading graph....
      Amount Heading Description
      £39,500 Outreach Service Staff costs
      £19,000 Outreach on costs Staff travel, training, supervision, management costs
      £37,000 Information & Production Website costs, staff costs, publication costs
      £8,500 Peer Support Staff costs

    Current Funding / Pledges

    Source Amount
    Clive & Sylvia Richards £10,000 Guaranteed
    Eveson Charitable Foundation £5,000 Guaranteed
    Avexis £20,000 Guaranteed
  • Background


    SMA Support UK works throughout England, Wales, Scotland and Northern Ireland delivering our services to all those who request them. Social events are delivered in accessible venues around the UK.


    Beneficiaries of the project include: babies and children with SMA, families of those affected by SMA, adults living with SMA, bereaved families and healthcare professionals . We estimate this project will support 2,000 people living with Spinal Muscular Atrophy.

  • Why Us?

    Why Us?

    Our charity is over 30 years old & is the most respected organisation delivering services to people affected by SMA. We are the only SMA support charity accredited to The Information Standard, a certification programme that ensures public-facing health & care information is created to a set of best practice principles, uses only recognised evidence sources & presents information in a clear & balanced way . We work closely with NICE, NHS, MD UK & The SMA Trust.

    Read more about the Charity running this project.


    Lesley Luck

    Registered nurse Lesley is one of our Outreach Workers. Lesley's calm & caring manner & considerable knowledge offers great comfort to families.

    Libby Roper

    Has worked for the charity for 5 years & does a fantastic job or pulling together information for our website, newsletters, e-news and social media.

    Jackie Guyler

    Has worked for the charity for the 13 years & provides telephone and email support & runs the Peer to Peer Volunteering programme.

    Liz Ryburn

    Has worked for the charity for 7 years is the Support Services Manager. Liz uses her significant experience to help advocate on behalf of families.