Winnie is an 11-year-old living with spinal muscular atrophy (SMA) who loves musicals, drawing, and playing sports with her brothers. After her recent surgery, she wrote a book to help other kids get through theirs. If you’ve ever helped a child get ready for surgery, you know the questions that come with it. How long
Meet Winnie, the 11-Year-Old Author Helping Kids Face Surgery Read More »
This week, the unmet health and everyday living needs of adults with spinal muscular atrophy (SMA) took center stage in Washington, DC, in an event organized by Cure SMA. Adults with SMA from across the country participated in the September 27-28 event to discuss the significant challenges and barriers they face that impact their health
Adults with SMA Share Their Unmet Needs and Independence Barriers in Washington D.C. Read More »
From a lively “Evryday Café” exhibit hall experience to an advocacy reception featuring conversations on policy and access, Genentech recaps a full week connecting with the SMA community at this year’s Annual SMA Conference. Read their latest community update here.
Genentech Shares Highlights from an Unforgettable Week at the Annual SMA Conference Read More »
From the High Dose SPINRAZA symposium to a family-friendly poster session, Biogen recaps their experience at this year’s Annual SMA Conference and highlights new tools for the community. Read their latest community update here.
Biogen Shares Conference Highlights and New High Dose SPINRAZA Resources Read More »
The Cure SMA Hub is your go-to space at the Annual SMA Conference to learn about key Cure SMA programs and opportunities for involvement. Stop by to sign up for fall events, learn about advocacy, and connect with different Cure SMA teams. This year, we are also excited to feature special guest community volunteers who
Visit the Cure SMA Hub at This Year’s Annual SMA Conference Read More »
NMD Pharma recently shared exciting news with the SMA community: the last participant has completed their part in the SYNAPSE-SMA Phase 2 clinical trial, testing ignaseclant (formerly known as NMD670), an investigational therapy designed to help strengthen skeletal muscles. The trial included 52 adults with SMA Type 3 at sites across the US and Europe.
NMD Pharma Releases Community Letter Regarding Phase 2 SYNAPSE-SMA Clinical Trial Read More »
Cure SMA is pleased to announce the publication of the 5th annual State of SMA report. Drawing on data collected by Cure SMA through 2025, this report features insights into the progress and ongoing challenges impacting people with spinal muscular atrophy (SMA) and their families. Previously, the annual report has also been used to advocate
Cure SMA Releases the 2025 Annual State of SMA Report Read More »
This spring, we’re asking our community to help us invest $1 million in basic research by June 30. Every breakthrough in spinal muscular atrophy (SMA) research has one thing in common. It wasn’t built by one person or one gift. It was built by people who believed progress was possible. This spring, we’re asking you to help build the next breakthrough
Breakthroughs Built Together: Help Cure SMA Close a Critical Research Funding Gap Read More »
Thank you to the individuals with spinal muscular atrophy (SMA), their family members, and other supporters who helped advocate for SMA community priorities in 2025. As the year comes to a close, we want to recognize the SMA community for all you did to raise awareness about SMA and advocate for policies that promote independence
Cure SMA Advocacy Highlights of 2025 Read More »
