Cure SMA is pleased to announce that South Carolina is now screening babies born in the state for spinal muscular atrophy (SMA). South Carolina Department of Health and Environmental Control (DHEC) officials shared ...
Novartis Gene Therapies has provided an update to the SMA Community. Check out the latest here!
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 ...
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 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 ...
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 ...
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 ...
Learn about Biogen's latest news in SMA by viewing their Community Statement (available as a PDF) and a related video.
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 ...
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 ...
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 ...
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 ...
