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MTA appraisal for nusinersen and spinraza

Drugs under review

Both treatments have been funded via time limited Managed Access Agreements (MAA) which come to an end this year. Find out about how SMA UK are invovled, what this means for the SMA Community and how you can have your views heard.

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SMArt Moves Grant

We are delighted to reopen our SMArt Moves Grant for applications. This grant can assist the SMA Community in purchasing mobility equipment and wheelchairs.

NEW WEBINR (A4 (Landscape))

Treatment update

Update from Consultant Paediatric Neurologists Dr Min Ong and Dr Imelda Hughes on the Zolgensma programme in the UK

Ride Scorpion 2024

Ride Scorpion is back!

Join us in 2024 and ride through the beautiful Cotswolds countryside to raise funds for SMA UK!

Transition

Moving Forward

Moving Forward is an interactive and exciting day of free workshops for young people, who have SMA and are aged 13-21 years to explore information and opportunities that might be useful and of interest to them as they move forward to adulthood.

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Living with SMA Podcast

The Living with SMA Podcast invites different hosts from across the SMA Community together to discuss different topics talking openly and honestly. We also hear from SMA experts who share their knowledge and advice for everyone affected by SMA.

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Fundraising

17/1

Two powered wheelchair users will race up Snowdon to raise £100k… #KnowNoBounds

10/10

Family smash target, climbing the Three Peaks in under 24 hours!

27/9

Zoe Henderson designs another fantastic Christmas Card for SMA UK!

View all Fundraising >
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News

19/2

Thames Valley Pilot Study extends beyond the Thames Valley and finds a new name, due to enthusiasm for newborn screening for SMA in other places

6/2

Disability Action Plan 2024

24/1

Final call for responses to survey: What do the SMA Community think about screening all newborn babies for 5q SMA?

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Treatments & Research

18/12

Updated guidance on Risdiplam

18/12

Roche Provides End of Year Community Update

27/11

Republic of Ireland adds SMA to the newborn screening blood spot test!

View all Treatments & Research >

SMA in numbers

1985

Founded as the Jennifer Trust

262

Families and adults living with SMA we’ve supported over the last 12 months

1,256

Downloads of our Living with SMA podcast in the last 12 months