Community

"Starting university with SMA felt terrifying. Between DSA, accessible accommodation and Access to Work, I now have a full-time marketing job I love. It took effort but it's absolutely possible."

"Theo's diagnosis at 8 months was devastating. Starting Zolgensma before he lost more function made an enormous difference. He's at school now and surprising us every day."

"I stopped walking in my late 20s. Finding the adult SMA community changed everything. People who understand the fatigue, the planning, the grief — and still live fully."

"My school was brilliant when we got my exam access arrangements in place — extra time and a laptop. My GCSEs were better than I expected. Sixth form feels much less daunting now."

"Transitioning Callum to university was the hardest thing we've done as a family. But seeing him thrive there, with the right support, made it worth every difficult conversation."

"I was diagnosed at 42 after years of unexplained weakness. Type 4 SMA is rare and often unrecognised. Having a name for it — and a community — finally made sense of my whole life."