Spinal Muscular Atrophy UK

In June, our Support Team handled 62 enquiries from the SMA Community, covering everything from education to equipment and more! 💬 If you need any help or advice, our Community Support Team is here for you. 👉 Reach out today: smauk.org.uk/support-team

Got a small business, craft, or creative venture? 📣 Join us as a stallholder at The Big Weekend: Forty and Forward! If you’ve got a link to SMA and something awesome to share, we’d love to hear from you. 📩 DM us or email: [email protected]

📢 This Autumn, the Government will unveil SEND system reforms. The Disabled Children’s Partnership (DCP) has launched the #FightForOrdinary campaign in response, advocating for disabled children’s rights. 💪 Get involved 👉 bit.ly/4m5eRXh #SEND #DisabilityRights

We're delighted to see so much news coverage highlighting the need for Newborn Screening for SMA to be implemented in the UK 📣 Awareness alone isn’t enough. We need newborn screening for SMA to happen now. 📺 Watch the recent coverage here: smauk.org.uk/bgvw

As part of our advocacy work, SMA UK takes real experiences of people living with SMA to regulators & pharmaceutical companies to inform decisions. 💬 Please take 5 mins to share your views on treatment choices (anonymous). 👉 bit.ly/45egJHC

🚨 New SMA Europe Youth SMArt TV Episode! “Wheelchair Freedom with Amelia” is LIVE! 19-year-old Amelia shares what mobility means to her and why wheelchairs are not a luxury but an essential part of life for many people living with SMA 👉 bit.ly/46aSCKV

We’re teaming up with specialist physiotherapists across the UK to understand people’s experiences of exercising with SMA 📣 If you live with SMA or support someone who does, we’d love to hear from you. It only takes a few minutes 👉🔗 forms.office.com/e/ADwf7dTM0z

A massive thank you to the amazing Team Hollie for hosting their annual fundraising Ball in support of SMA UK last month 🤩 We’re so grateful to the Flatman family and their whole team for their continued support and for making this event so special, year after year! 💜

Thank you to the lovely team at Technical Drive, who completed a 20km walk and 20km canoe all in the name of SMA UK 🤩 They raised a total of over £1,000 and were inspired to fundraise as they are also helping us with our IT support 📣✨ @TechnicalDrive_

Could you help us to make The Big Give Christmas Challenge 2025 a success? 📣 We have set ourselves an exciting target to raise £40,000 through our matched funding campaign in December and we are looking for Pledgers who can contribute! Read more 👉 smauk.org.uk/biggive

A massive thank you to Will who cycled from London to Brighton and raised close to £8,000 for SMA UK in honour of his son Jack, who lives with SMA. 🚴‍♂️ 🌟 We’re so grateful for Will’s incredible effort and for everyone who donated!

This new report from Genetic Alliance UK highlights how the UK can expand newborn screening to better support babies with rare and genetic conditions 📣 Read the report here 👉 smauk.org.uk/nbs

On Thursday 3rd July, we joined the Care and Support Alliance in Parliament to talk to MPs about how important good, reliable social care is for disabled people. 📣 Read Mollys blog about the day #ShowUsYouCare 👉 smauk.org.uk/k7gt

The Specialised Healthcare Alliance has launched ‘Are you okay? Rare diseases and mental health – A case study report’. 📣 Hear directly from those affected as they share their experiences. Read the report 👉 bit.ly/46fJa9l

🪂 On Saturday 28th June, 15 fearless fundraisers, including some our own SMA UK team, leapt from 14,000ft in a charity skydive for SMA UK, raising an incredible £10,000! 🎉👏 A massive THANK YOU to everyone who took the plunge and to everyone who supported them!✨

We’re sorry to announce that the Westminster photo op on 16 July isn’t going ahead. Instead, SMA UK will be meeting the National Screening Committee to ensure patient voices are heard. We’ll share updates soon, including how you can support the next steps in this vital work. 📣

Government U-Turns on Key Disability Benefit Cuts After Backlash 📣 The UK government has significantly U-turned on key elements of its controversial disability benefit reform proposals. Read more here 👉 smauk.org.uk/elq6

🌟 Exciting News! 🌟 We’ve increased spaces for this year’s RESONATE event! 🎉 🗓 18 – 21 July 2025 📍 Calvert Trust Exmoor, EX31 4SJ Don’t miss out! Ask questions or book here: 👉 bit.ly/3THOGKp

Great North Run 2025 – Charity Place Available! 🎽 One spot just opened to run the #GreatNorthRun for SMA UK! 💪 ✨ Entry: £25 🎯 Fundraising: £500 📬 First come, first served – email [email protected] to join! 🏃‍♀️🏃‍♂️

SMA Care UK - One year on! 📣 We are proud to share our Year 1 progress report for SMA Care UK, a 3-year collaborative project updating the standards of care for people of all ages living with spinal muscular atrophy across the UK. Read the report here 👉 bit.ly/4l1C2lf