Novartis pharmaceuticals have announced that the FDA have approved Itvisma® (onasemnogene abeparvovec-brve), a new version of the gene therapy, for treating children two years and older, teens and adults living with SMA 📣 Read the full blog 👉 https://t.co/3AdYMFNNBB

Following the committee meeting on the 11th November, NICE have decided to pause the process whilst the pharmaceutical companies take on additional technical work. 📣 Find out more, including why this is a positive step here 👉 https://t.co/As5eEOwMGt

Exercise can be safe and beneficial, but many of us struggle to stay active. This 5–10 minute survey helps researchers understand what supports or limits physical activity in the SMA community 📣 👉 https://t.co/gPSZgcbpyT

The official Forty and Forward Big Weekend video is now live! 📣 Take a look at some of the many highlights from this fantastic weekend, celebrating forty years of SMA UK 👉 https://t.co/p6pJ4xxwoN ✨

We’re refreshing our podcast to feel even more fun and practical! 🎧 Share your feedback and episode ideas in this short survey, and sign up to be a guest! 👉 https://t.co/mwH5BHPBCW

The Official family portraits taken at The Big Weekend event are available!📣 If you and your family had official family photos taken, please submit your request to receive the photos here 👉 https://t.co/BBFBKrdvNb

Today is first NICE committee meeting for this joint review of the two drugs, Spinraza (Nusinersen) and Risdiplam (Evrysdi) (known as a Multiple Technology Appraisal, or MTA). Read more about it here 👉 https://t.co/iEBfq1sa54

We're continuing to share our key advocacy points from our joint response to NICE’s updated assessment of Nusinersen and Risdiplam 📣 Our third focus is Challenging the Flawed Baseline: Why SMA Treatment Must Offer Choice, Not Just "Supportive Care" 👉 https://t.co/PgtZg0yHDk

Over the past few posts, we’ve shared highlights from an incredible weekend of talks, and they’re all live on our YouTube channel! Revisit your favourites or catch up on the ones you missed 📣 Next up is Adult Treatment and Research Updates : https://t.co/M317XkMc4o

Our next video from the Big Weekend dives into the SMA Care UK Project! 📣 Watch it now, along with the rest of the recorded talks from SMA UK's Big Weekend on our YouTube channel 👉 https://t.co/glJlCkjsHP

We’re back with another talk from our big weekend! You can now catch them all on our YouTube channel! 📣 🎥 Next up: Physio Through Play Watch it here 👉 https://t.co/A55OuF27FJ

We're continuing to share our key advocacy points from our joint response to NICE’s updated assessment of Nusinersen and Risdiplam. Our second focus is The Power of Real-World Data 📣 Read the full blog here 👉 https://t.co/oetotoSr34

SMA UK have been working with NICE to bring you all the latest updates on the appraisal of Risdiplam and Spinraza. The latest post highlights exactly what process NICE will follow starting with the committee meeting on the 11th November. Find out more: https://t.co/52Q6N0dlk4

There's still time to place your 2025 Christmas Card order from our online shop! 🎄 There are four new designs to choose from, as well as stocking fillers including our Anniversary Tea Towel and SMArty the Aware Bear. ✨ Shop now 👉 https://t.co/PVdMcBiSKA

The Access to Work Collective's claims of cuts to the essential support for disabled people to work has finally been validated after repeated denials by the DWP. 📣🚨 Read more 👉 https://t.co/KFjdWTNpOf Join the campaign 👉 https://t.co/rt5eVoayK0 #AccessToNowhere

Missed some of our talks from the big weekend, or just want a refresher? Good news! You can now catch them all on our YouTube channel! 📣 🎥 First up: Paediatric Treatment and Research Updates Watch it here 👉 https://t.co/lHh6klkbmZ

We need your input! 💬 Help shape the future of our SMA community events by sharing your thoughts in this quick survey. Let’s make our next events even better together! 💪✨ Take the survey 👉 https://t.co/77WpJZfhNh

📣 We're gathering insights on care standards in respiratory health, spines, and hips across the UK. Share your thoughts and enter to win a £100 voucher! 🎁 Take part here 👉 https://t.co/vXf5gpNMkB #SMACare

Over the next few weeks, we’ll be sharing our key advocacy points from our joint response to NICE’s updated assessment of Nusinersen and Risdiplam. Our first focus is Beyond Mobility 📣 Read the full blog here 👉 https://t.co/YG86O1V616

📢 Contact, the charity supporting families with disabled children, is hosting a free National Seminar (England) focused on supporting fathers and male carers of young children with SEND. 🗓️ Wed, Oct 15, 2025 | 11:30 AM 🎟️ Register here: https://t.co/ifG5muRGIq