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About SMA UK

At SMA UK, we are committed to supporting everyone affected by SMA so that they have access to the best care, support and treatment and there will be no barriers preventing full inclusion in society.

Watch our short film here.

Help us spread the word! SpotSMA!

We are on the hunt for as many community champions as we can find to spread the word about our spot the signs campaign! All you have to do is order a pack of resources and take them along to your local GP, early years education provider or any other place where you think professionals might Spot the signs!

Read more here >
SPOT SMA PLAIN

Find out more about the work we do

Final draft 2026 Annual Report

2025 – 2026 Annual Report

Take a look back at the year, explore our achievements and discover the progress we’ve made. Read our latest Annual Report to find out more.

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The Big Give – Double your donation!

The Big Give Christmas Challenge is taking place from Tuesday 1st December until Tuesday 8th December giving you the exciting chance to DOUBLE your donation to SMA UK for one week only!

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SMA Care UK

SMA Care UK is a 3 -year project established by clinicians and patient groups to update and implement UK Standards of Care for people of all ages living with SMA.

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Newborn screening for SMA

There is clear evidence that early diagnosis and treatment of SMA leads to better outcomes. Early detection of the condition is critical. Read more about our work in this area here.

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FlexiGrants

Our FlexiGrants support all those living with SMA. We have two grant schemes which are open to all. Applications may be made to one or both. Decisions are made as quickly as possible.

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X8 off road wheelchair for hire!

We are delighted to be able to offer the SMA Community a new X8 off road wheelchair to hire for free. Find out more here.

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Fundraising

16/7

Charity golf days: A great way to have fun and raise funds

15/1

Steven’s Ziplining Challenge

28/5

Giles’ Epic Capital to Capital Cycle

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News

6/11

Junior Blogger Libby Blow: Dream it, Believe it, Achieve it!

3/11

SMA UK joins families and MLAs in Belfast to call for newborn screening for SMA in Northern Ireland 

27/10

SMA UK and MDUK Meet with Welsh Government to discuss Newborn Screening for SMA in Wales

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Treatments & Research

7/10

Apitegromab’s US approval leaves a UK access gap

6/10

SMA Care UK at WMS 2026 – Sharing our work and learning from the international SMA community

21/9

NICE Committee Meeting on Intrathecal Onasemnogene Abeparvovec for SMA: October 2026

View all Treatments & Research >

SMA in numbers

638

Families and adults living with SMA we’ve supported in 2025

63

Families and adults receiving wheelchairs through SMArt Moves Grants in 2025

167

Families and adults getting support through FleixGrants in 2025