In a world where adversity often brings out the best in people, the Stickane family of Southlake, TX stands as a shining example of unwavering love and resilience. Their journey began when their middle son, Luke, was diagnosed with SMA in 2017. Luke’s diagnosis with SMA was a turning point for the Stickane family […]
Leland Ianno is eight years old, but he’s an old soul with a deep curiosity, a love of people, and a passion for history. His mom, Holly, says “Leland is fascinated by historical times but also the history of the people around him. He wants to know everything, and he’ll sit and have a conversation
Community Spotlight: Holly Ianno and Family Read More »
You did it! We’ve now reached our goal of 100 percent newborn screening of spinal muscular atrophy (SMA) in all 50 states with the addition of Hawaii at the start of 2024. You made this accomplishment possible by advocating and making the case at the state and national level for universal newborn screening. Your
100% of States Now Screening Newborns for SMA Read More »
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 »
