Spinal Muscular Atrophy UK

SMA UK have been busy creating a new book for children aged 7-13 living with SMA 🤩 If your child would be interested in reviewing the draft book for us in the new year, then please get in touch with our Head of Advocacy and Community  [email protected] 📣  

On SMA UK’s website you can read a whole range of experiences and thoughts from members of the SMA Community; being a parent who has SMA, driving a car and much more! 📣 If you would like to add your we would love to hear from you, please contact [email protected]. For some inspiration head over to our community voices page 👉 smauk.org.uk/voices

For the second year, SMA UK was thrilled to be invited to the Annual Nissan Company Council Employee Charity Event, where we received a £2000 donation! 📣 Louise Hayes, mum to Arthur with SMA type 2, nominated SMA UK as a beneficiary 💖 Our CEO, Giles Lomax, thanked the staff for their continued support and highlighted how the funds will support initiatives like the new Rareminds counselling service and Flexigrants. A huge thank you once again! ✨

💬 We want to hear from you! Share your experiences of accessing treatment and care in the UK to help shape our advocacy work. 🌟 Join expert SMA clinicians and the SMA Care UK project manager at events in London or Manchester. Your input is vital, and you’ll be reimbursed £200 for the day plus expenses! 📅 Find out more and sign up here: smauk.org.uk/APW

🎄 Today is Christmas Jumper Day for SMA! ✨ Thank you to everyone who is taking part and helping to raise awareness and vital funds for SMA UK! You can make a donation at bit.ly/3Bp72tX 🎁 and don’t forget to tag us in your festive photos or send them in to [email protected] 📸❄️

🎄 Christmas Closure Notice 🎄Our office will be closed for Christmas from Friday, 20th December and will reopen on Thursday, 2nd January. During this period our team will be out of reach, however you can still find plenty of useful information on our website to help with any questions or needs you may have. Wishing everyone a joyful festive season and a Happy New Year! 🌟

In honour of International Day of People with Disabilities, GOSH celebrated the remarkable impact of GOSH patient, George Tappenden on their social media platforms 📣 Read more about George and his advocacy work here 👉 bit.ly/3VxnD5y

🎄 The Big Give Christmas Challenge has officially wrapped up, and WOW—what an incredible response! 💚 A massive THANK YOU to everyone who donated. Your generosity will make a huge difference! 🙌✨ #ThankYou #BigGiveChallenge

The government has announced additional help with the cost of living through the Household Support Fund, which has been extended until March 2025 📣 Find out what your council is offering on the Turn2Us website here 👉 bit.ly/49AXusr 🔗

Your donations to the Big Give #ChristmasChallenge make a BIG impact! 💙 They help fund our Community Support team AND bring together the SMA Community at events, like the amazing Under 18’s Resonate weekend in September! DOUBLE your donation before midday on Tuesday, 10th December 👉 https://bit.ly/4iejxZV 🎄✨