Spinal Muscular Atrophy UK

Spinal Muscular Atrophy UK Help for Today. Hope for Tomorrow Spinal Muscular Atrophy UK was established in 1985. Our Outreach Workers can also visit people at home.
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Our website provides a wide range of information about SMA and related topics. Our Support Services team provides free information, emotional support, practical advice and guidance by phone and email. We support and fund research related initiatives.

Carers week may have come to an end, but our appreciation of all carers is ongoing. Read what Katie has to say about bei...
17/06/2026

Carers week may have come to an end, but our appreciation of all carers is ongoing. Read what Katie has to say about being a mum and a carer to her son, Harry, in our latest blog 👉 smauk.org.uk/22jn 📣

Here at SMA UK, we'd like to say a huge thank you to everyone who took part in Marathon in May 2026! 📣 Just over £7,500 ...
16/06/2026

Here at SMA UK, we'd like to say a huge thank you to everyone who took part in Marathon in May 2026! 📣 Just over £7,500 has been so far raised including Gift Aid, with donations still coming in, so we hugely appreciate everyone who took part or donated this year 🩷

Newborn screening for SMA is currently only set to cover around 72% of babies in England starting on a phased roll out i...
15/06/2026

Newborn screening for SMA is currently only set to cover around 72% of babies in England starting on a phased roll out in October this year.

The petition to add SMA to newborn screening in England will be debated in Parliament on 22 June. We’re urging the Government to expand screening beyond a limited number of sites and ensure it is available across the whole of England. 📣

To make this happen, we need MPs in the room.

Please tag your MP in the comments, and ask them to attend the debate and support urgent action to give every baby the best possible start through early diagnosis.

Please share this post to help us reach as many people as possible using 🏷️

We’re looking ahead at how SMA UK can continue to support people affected by SMA in the best possible way 📣 As we review...
13/06/2026

We’re looking ahead at how SMA UK can continue to support people affected by SMA in the best possible way 📣

As we review and strengthen our services for the future, we’ll be introducing new ways for our community to connect and access support, including a series of online support sessions open to anyone affected by SMA.

Read our latest blog to find out more about our plans for the future and what they mean for the SMA community 👉 smauk.org.uk/ulvg

As part of Carers Week, we are celebrating the incredible contribution that carers make every day. Caring can take many ...
12/06/2026

As part of Carers Week, we are celebrating the incredible contribution that carers make every day. Caring can take many forms, from supporting a family member to working as a professional personal assistant, but at its heart it is about helping people live the lives they choose. 🩷

In this blog, Rosie Murrell shares her experience of supporting Molly, who has Spinal Muscular Atrophy. Read the full blog here 👉 smauk.org.uk/y4ek

Explore our Treatment & Care Webinars with Experts and hear directly from leading SMA specialists, Including our two lat...
11/06/2026

Explore our Treatment & Care Webinars with Experts and hear directly from leading SMA specialists, Including our two latest webinars: 'Update on treatments for adults' and 'Children with 5qSMA'. Our webinars are designed to keep you informed, supported, and connected to the latest expert advice 📣 Check them out here 👉 smauk.org.uk/d7og

As part of Carers Week (8–14 June), we are shining a light on the experiences of unpaid carers and the invaluable role t...
10/06/2026

As part of Carers Week (8–14 June), we are shining a light on the experiences of unpaid carers and the invaluable role they play in supporting loved ones every day! 📣 In this blog, Becci Howell, one of our Community Support Practitioners, shares her experience of being an informal carer 👉 smauk.org.uk/rfuf

📢 Share Your Views on a New SMA Gene Therapy Itvisma, a one-off gene therapy for people aged 2+ living with SMA, will be...
09/06/2026

📢 Share Your Views on a New SMA Gene Therapy

Itvisma, a one-off gene therapy for people aged 2+ living with SMA, will be reviewed by NICE next month. If you are living with 5q SMA and have NOT received Zolgensma gene therapy, we would like to hear from you.

Take part in the Itvisma™: Community Perspectives study and help ensure the SMA community’s voice is heard when decisions are made about treatment access, patient support, and information provided to patients and families.

✅ Anonymous survey
✅ Open to people living with 5q SMA who have not had Zolgensma

Your experiences and perspectives can help shape future advocacy efforts and ensure that what matters most to the SMA community is understood by pharmaceutical companies and regulators.

Take the survey here 👉 smauk.org.uk/fp6d

Have you heard about Itvisma? 💡 It is a new, one-off gene therapy treatment for individuals with Spinal Muscular Atrophy...
05/06/2026

Have you heard about Itvisma? 💡 It is a new, one-off gene therapy treatment for individuals with Spinal Muscular Atrophy (SMA) who are aged 2 years and older 📣 Read more about this treatment here 👉 smauk.org.uk/fp6d

Join host Molly Everitt alongside Lauren West and Jack Hassan for an insightful discussion on adult social care, the Ca...
04/06/2026

Join host Molly Everitt alongside Lauren West and Jack Hassan for an insightful discussion on adult social care, the Casey Commission, and what the future of social care reform could mean for people living with SMA 📣 Watch the webinar here 👉 bit.ly/49IEUzT

Address

Unit 9, Shottery Brook Office Park, Timothy's Bridge Road
Stratford-Upon-Avon
CV379NR

Opening Hours

Monday 8:30am - 4pm
Tuesday 8:30am - 4pm
Wednesday 8:30am - 4pm
Thursday 8:30am - 4pm
Friday 8:30am - 1pm

Telephone

+441789267520

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