Nevada has become the 49th state to begin screening for spinal muscular atrophy (SMA). Nevada State Public Health Laboratory officials confirmed with Cure SMA that beginning December 21, 2023, all Nevada newborns will be screened for SMA, a neuromuscular disease. “We are grateful for the work of the Nevada Department of Health and Human Services […]
Nevada Starts Screening for SMA – Only One State Remains! Read More »
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
“There is an endearing tenderness in the love of a mother to a son that transcends all other affections of the heart,” said Washington Irvine. When watching River Rolle wriggle in his mother Dee’s lap while he sweetly places his hand on her chin and looks into her eyes, there is nothing more apparent than
Community Spotlight: Dee and River Rolle Read More »
