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 »
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 »
Cure SMA has updated its Health Insurance Road Map to help patients, families, and providers navigate the complexities of health insurance. The updated resource reflects the current healthcare landscape and offers essential tools to simplify challenging insurance topics and promote informed decision-making. The Health Insurance Road Map includes: Clear definitions of commonly used insurance terms
Cure SMA Updates Health Insurance Road Map to Support Patients and Families Read More »
Cure SMA is excited to announce the launch of a brand-new equipment grant program, made possible through the generous support of the Luke 18:1 Foundation. This program will provide Fold & Go Travel Electric Wheelchairs to children and adults living with SMA that they will own outright, not borrow. Unlike our current equipment pool loan
Cure SMA and the Luke 18:1 Foundation Launch New Fold & Go Wheelchair Grant Program Read More »
Dear SMA Community, Yesterday was a disappointing and frustrating day for our community. We learned of two FDA approval delays for Scholar Rock’s apitegromab and Biogen’s high-dose nusinersen/Spinraza. While there are many unknowns regarding timelines and next steps, the most encouraging news in all of this is that the issues named by the FDA are
Cure SMA Update on SMA Treatment Delays Read More »
Today, Biogen announced that the U.S. Food and Drug Administration (FDA) has delayed the approval with a Complete Response Letter (CRL) for the supplemental New Drug Application (sNDA) for the high-dose regimen of nusinersen (SPINRAZA) for people living with spinal muscular atrophy (SMA). The CRL requests updates to the technical information included in the Chemistry Manufacturing
