Genentech recently released an update on their continued collaboration with the SMA community and Evrysdi® tablet updates. They will continue to provide timely updates as they become available. Read the full community update letter here. “Looking back, 2025 was a time that was undeniably defined as a year of great change. We successfully navigated shifts, […]
Genentech Releases Winter SMA Community Update Letter Read More »
Cure SMA warmly invites you to join us at one of our 2026 Walk-n-Roll events—where community meets impact! This year, you can register and start fundraising for both spring and fall events right now. Walk-n-Roll isn’t just a fundraiser; it’s a celebration of progress, hope, and togetherness. It’s a chance to gather with others who
All 2026 Walk-n-Roll Events Are Open 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 »
Watch the video and see how far we’ve come and the future we’re building together. Donate to Support the SMA Community Your support accelerates research, strengthens advocacy, and expands critical family services for individuals and families living with SMA. Make your impact today.
Together, We’re Changing the Story of SMA Read More »
Earlier this year, Cure SMA launched an expanded Phase 10 of the SMA Industry Collaboration. The SMA Industry Collaboration is a multi-faceted partnership that brings together pharmaceutical companies, SMA Europe, Cure SMA, and other nonprofit organizations to share information, ideas, and data to benefit the broader SMA community. Through the Industry Collaboration, we fund projects to ensure
Cure SMA Shares Updates on the Phase 10 SMA Industry Collaboration Read More »
Today is Giving Tuesday, and there’s an incredible opportunity to double your impact! The Luke 18:1 Foundation has stepped forward with a $50,000 gift and invited our community to double the impact in the next 24 hours. By giving today, you help us rise to this special Giving Tuesday challenge and bring meaningful support to children,
Double Your Impact this Giving Tuesday! Read More »
Novartis today announced that it has received approval from the U.S. Food and Drug Administration (FDA) for Itvisma (onasemnogene abeparvovec-brve) to treat adults and children 2 years of age and older with spinal muscular atrophy (SMA). Itvisma (onasemnogene abeparvovec-brve) is a gene therapy that works by delivering a functional copy of the SMN1 gene directly to motor neurons, helping the body restore
Novartis Receives FDA Approval of Itvisma for the Treatment of SMA Read More »
Read the Scholar Rock community statement here. Scholar Rock recently held an in-person Type A meeting with the FDA on November 12 to discuss the Biologics License Application (BLA) for apitegromab, a potential treatment for children and adults with SMA. Cure SMA was present and active at this FDA meeting to represent our
Scholar Rock and Cure SMA Share Update on Apitegromab and FDA Meeting Read More »
Novartis recently released an update on their continued collaboration with the SMA community through fundraising events and community support programs, and they will continue to provide timely updates as they become available. Read the full community update letter here. “Over the past few months, we’ve been inspired by the continued strength, unity, and advocacy across
Novartis Releases Fall SMA Community Update Letter Read More »
As 2025 starts to wind down, Cure SMA is proud to launch our year-end fundraising campaign: Unlock a Future of Possibilities. This theme represents hope, progress, and the life-changing difference your support makes for individuals and families impacted by spinal muscular atrophy (SMA). At the heart of this campaign are four members of the SMA community
Unlock a Future of Possibilities: Cure SMA Launches Year-End Campaign Read More »
