SMA Awareness Month
SMA Awareness Month
SMA Awareness Month 2026
Every piece of the puzzle: Celebrating the SMA Community!
This year’s SMA Awareness Month is an opportunity to celebrate how far we’ve come as a community and to recognise the many people who have made that progress possible.
Today’s SMA landscape looks very different to even ten years ago. We have access to life-changing treatments, newborn screening is set to begin in England from October 2027, research continues to move forward, and more people with SMA are living longer, fuller lives than ever before.
None of this happened by chance. Every breakthrough has been built on years of campaigning, research, clinical expertise, fundraising, policy change and, above all, the voices of people affected by SMA who have shared their experiences to help create change.
How to get involved:
This Awareness Month, we want to celebrate every piece of that puzzle and how far the SMA community has come together by:
- Recognising the many people whose voices, expertise and determination have driven progress.
- Highlighting the role of families, adults living with SMA, clinicians, researchers, campaigners,
supporters and partner organisations. - Reflecting on the milestones we’ve achieved from improving standards of care and access to treatments, to newborn screening and ongoing research.
- Inspiring hope while recognising there is still more to do to ensure everyone affected by SMA has the support and opportunities they deserve.
Find out how you can share you story and thoughts by reading our campaign plan here.
Every Piece of the Puzzle Blog Posts
Click on the images below to read the relevant blog!
Previous Awareness Month Campaigns
For SMA Awareness Month 2025, we asked you to help us raise awareness about the importance of adding SMA to the Newborn Screening blood spot test in the UK.
There is clear evidence that early diagnosis and treatment of SMA leads to better outcomes and early detection of the condition is critical. The NHS offers newborn blood spot screening (using a heel prick to take blood) when a baby is 5 days old. It currently looks for 9 rare but serious conditions. This does not include SMA.
Throughout August, we are asking you to share your photos and videos highlighting our hashtag #ScreenTodayForSMA.
How you got involved
- You can download our poster here to print and then take a photo or film a short video. Then either share it
on your Socials and tag us or send it to us at bec.noy@smauk.org.uk or WhatsApp them to us at 07485949450
- If you would like to do even more to help raise awareness then we have a range of merchandise available to purchase in our online shop including limited edition 40th anniversary T-shirts and new commemorative T-Towels as well as SMArty our Aware Bear.
- All donations we receive help us continue our vital work, supporting the SMA Community and raising awareness. You can help support our work by making a donation here
You can read more about our fight for Newborn Screening and the latest news by clicking here.
For SMA Awareness month 2024, we invited you to help raise awareness of SMA by sharing your photos of our new SMA Aware Bear, Smarty!
Many of you purchased your very own bear, and by doing so, not only did you get a companion for your summer adventures, but you also supported our cause and helped spread awareness wherever you went. We asked you to take him with you on all your summer activities. Whether you went on holiday, visited the park, or just spent time at home, our bear was excited to join you! From China and Rome to SMA UK’s resonate weekend, he’s been spreading awareness across the globe with your help! SMA Awareness month may be coming to a close, but Smarty’s journey is far from over!
SMA Awareness Month was a crucial time for us to educate others about Spinal Muscular Atrophy and advocate for those affected by it. By taking our bear on your adventures and sharing your photos, you helped shine a spotlight on SMA, and we invite you to do this far beyond SMA Awareness month! So if you haven’t already, head over to our website shop and grab your very own Smarty Bear and get snapping some pics!
SMA Awareness month 2023!
August is SMA Awareness month, and for 2023 we worked alongside SMA Europe to put SMA in the spotlight!
We celebrated what makes you, the SMA Community, unique as individuals. Our goal was to uplift your voices, sharing your experiences, needs and wishes for the future, as well as raising awareness to people outside the SMA Community, and raising funds to help us continue our work.
We’d like to say a huge thank you to everyone who bought pin badges and donated to our SMA Awareness Month Just Giving Page but also to everyone who shared their story with us to help raise awareness of SMA, and to everyone who got involved in our #IAmUnique montage video!