One of Cure SMA’s top priorities is to relay the SMA community’s treatment experiences and preferences to the United States Food and Drug Administration (FDA). This helps the FDA make patient-centered decisions about new SMA drugs. 2022 Cure SMA Risk/Benefit Survey Results In the 2022 Cure SMA Risk/Benefit Survey, we asked people with SMA […]
Analysis: Cure SMA’s Risk/Benefit Survey Read More »
Cooler weather serves as a reminder to explore how to keep ourselves healthy through the cold and flu season. What you can do to protect yourself and others from winter illnesses Avoiding others who are ill, sanitizing and/or washing hands often, covering coughs and sneezes when possible, and wearing a mask when in large groups
Winter Immunization Recommendations Read More »
This week, Novartis Gene Therapies released an SMA community statement detailing the progress on enrollment for both STEER and STRENGTH clinical trials, their investigational intrathecal (IT) OAV101 studies. Check out the full letter here.
Novartis Gene Therapies Releases SMA Community Statement Read More »
Our partners at Genentech recently provided an SMA Community Letter regarding Evrysdi® (risdiplam) and their clinical development program. Visit this link to learn more.
Genentech Releases SMA Community Letter with Evrysdi (risdiplam) Updates Read More »
We are excited to announce that registration is now open for the 2024 Annual SMA Conference, which will be held at the JW Marriott Austin in Austin, Texas from Thursday, June 6 – Sunday, June 9, 2024. We hope you can join us for another wonderful weekend in the Lone Star State! As always, the Annual
Registration is Open for the 2024 Annual SMA Conference! Read More »
Cure SMA is thrilled to have recently been featured in the National Football League’s (NFL) My Cause My Cleats campaign. Through this fantastic initiative, players select a charitable organization and cause of choice, in order to increase awareness by wearing cleats decorated in honor of that cause. For Rachaad White, Tampa Bay Buccaneers running back,
Cure SMA Featured in the NFL’s My Cause My Cleats Read More »
Two high-ranking Administration officials and several Members of Congress from key congressional committees participated in Cure SMA’s November 29th Hope on the Hill dinner and reception, an annual Washington, D.C. event that raises awareness about spinal muscular atrophy (SMA) with key government officials. The 2023 event highlighted key SMA community advocacy priorities, including accessible air
Breaking and Baking News! Get ready to dust off those aprons and preheat those ovens because Baking a Difference is back and better than ever for its second year! Created by kids, for kids, with hearts as sweet as the treats they bake, this heartwarming campaign is all set to spread joy and make
Sweet Success: Baking a Difference Returns for a Second Year Read More »
Biogen recently shared that they have completed enrollment in the global DEVOTE and RESPOND clinical studies. Check out the full SMA Community Statement here.
Biogen Shares DEVOTE and RESPOND Study Updates Read More »
Last week, Genentech, a member of the Roche Group, presented positive results from the primary analysis of the ongoing RAINBOWFISH study assessing the efficacy and safety of Evrysdi® (risdiplam) in babies with pre-symptomatic SMA, aged from birth to 6 weeks. These data were presented at the 28th World Muscle Society (WMS) Congress. Read more about
Genentech Shares 1-Year Primary Analysis from RAINBOWFISH Read More »
