Kids: We Invite You to Bake a Difference for Cure SMA!
Cure SMA is calling all future bakers and pastry chefs to help us bake a difference for individuals with spinal muscular atrophy (SMA). Baking a Difference was created by kids for kids with ...
Seat Elevators on Power Wheelchairs are a Necessity, not a Luxury, according to the SMA Community
Individuals with spinal muscular atrophy (SMA) who utilize power wheelchairs for their mobility agree that seat elevation, which allows an individual to adjust their wheelchair seat, helps improve mental and physical health, increase ...
Cure SMA Launches Benefit-Risk Survey to Assess Patient Perspective on Treatment Possibilities and Risks
Cure SMA is conducting a survey to understand our community's perspectives on treatment possibilities and tolerance for the side effects of currently available and planned therapies. The results will help inform our future ...
Cure SMA Care Center Network Site Expansion
The Cure SMA Care Center Network is excited to announce the addition of 9 NEW centers to the Care Center Network, bringing the current total number of participants in the Care Center Network ...
Community Statement from Novartis Gene Therapies: Zolgensma Safety Monitoring Update on Acute Liver Failure
Dear SMA Community, Novartis Gene Therapies is committed to patient safety and the ongoing monitoring of adverse events as it relates to the use of Zolgensma® (onasemnogene abeparvovec-xioi), the one-time gene therapy for ...
Biogen Shares Community Statement for SMA Awareness Month
Learn about Biogen's latest news in SMA by viewing their Community Statement (available as a PDF) and a related video.
FDA Issues Safety Warning Regarding Neck Float Devices for Babies
On June 28,2022, the U.S. Food and Drug Administration (FDA) issued a safety communication about using neck float with babies. This occurs when a serious injury has been reported while using a device ...
Community Spotlight: Alexandra and Joe Lakhman
While sibling relationships aren’t always easy, Alexandra ‘Lexi’ Lakhman and her brother Joe have always been close. Despite Lexi being six years older than Joe, she grew up viewing Joe as a role ...
Cure SMA Publishes Results from Survey Measuring Disease Burden in Adolescents and Young Adults
As treatment options increase for adolescents and young adults living with SMA, we need tools to measure the effectiveness of these treatments from the patient’s perspective. Dr. Chad Heatwole and his team at ...
Cure SMA Publishes Research Exploring What Is Important to SMA Clinical Trial Participants
The recent availability of new treatments for SMA would not have been possible without the participation of SMA-affected individuals in clinical trials. Yet participating in clinical trials can be stressful. We at Cure ...
2022 Cure SMA Annual Research Meeting Summaries – Special and Clinical Research Session
In June, SMA researchers and clinicians from around the world met in Anaheim, CA, for the 2022 Annual SMA Research and Clinical Care Meeting. There they shared their most recent data with the ...
2022 Cure SMA Annual Research Meeting Summaries – Basic Research Sessions
In June, SMA researchers and clinicians from around the world met in Anaheim, CA, for the 2022 Annual SMA Research and Clinical Care Meeting. There they shared their most recent data with the ...