Genentech, a member of the Roche Group, today presented 1-year data from the pivotal Part 2 of the SUNFISH study, evaluating risdiplam in people aged 2-25 years with Type 2 or Type 3 spinal muscular atrophy (SMA). The study showed that change from baseline in the primary endpoint of the Motor Function Measure 32 scale
Along with funding SMA research and offering clinical care services, Cure SMA provides thousands of affected individuals and families with vital support and resources that help them navigate daily life with SMA. We are thrilled to add to our equipment pool inventory the Panthera S3 Swing—a lightweight manual wheelchair for adults and teens living with
Cure SMA Adds New Equipment Item for Teens and Adults with SMA Read More »
Cure SMA is happy to announce the schedule for the 2020 Summit of Strength Program! Currently entering its third year, we have brought together nearly 3,000 community members from across the U.S.! Summits are crafted to provide people of all ages and types of SMA, and their caregivers, the opportunity to network and learn about
Summit of Strength Program Dates Confirmed Read More »
Genentech, a member of the Roche Group, today announced positive topline results from the pivotal Part 2 of the FIREFISH study, evaluating risdiplam in infants aged 1-7 months with Type 1 spinal muscular atrophy (SMA). The primary outcome measure of the study was the proportion of infants sitting without support for at least five seconds
The 2020 Annual SMA Conference registration numbers are growing quickly! We expect the 2020 conference – which includes both the Family Conference and the Research & Clinical Care Meeting – will be one of our biggest ever. Hotel rooms in our block are filling up, so be sure to register and make your hotel reservations
Annual SMA Conference Registration Continues to Grow! Read More »
Scholar Rock, a clinical-stage biopharmaceutical company focused on the treatment of serious diseases in which protein growth factors play a fundamental role, today highlighted key accomplishments of the past year and announced R&D priorities for 2020. Below please find a community statement from Scholar Rock specifically discussing SRK-015. ______________________________________________________________________________ Dear SMA Community, We at Scholar
Community Statement from Scholar Rock Regarding SRK-015 Read More »
On Tuesday, February 4th, at 11am CST (9am PST/10am MST/12pm EST) Biogen and Cure SMA will co-host a webinar for the SMA community. During the webinar, you’ll hear from Biogen about the latest information on its SPINRAZA clinical trial, DEVOTE, a Phase 2/3 randomized, controlled dose-escalating study with infantile and later-onset SMA of all ages,
Cure SMA and Biogen to Co-Host Webinar on DEVOTE Clinical Trial – Register Today! Read More »
Dear SMA Community, We are excited to be kicking off a new year and a new decade full of promise for the SMA community. Over the past week on our social channels, Cure SMA has been highlighting the past decade of progress and seeing all we have achieved has made us optimistic for what comes
Cure SMA’s New Year Letter for 2020 Read More »
Kara and Ryan Forcier, of Stillwater, Minn., were on a rollercoaster almost immediately after the birth of their son, Zachary. Zachary was born with skin lesions that turned into blood clots, which almost led to having his limbs and digits amputated. Thankfully this was not the case, and after the skin lesions healed, Kara and
Community Spotlight: The Forcier Family Read More »
John and Krista Scurria, of Baton Rouge, La., believe in a parent’s intuition. Krista first became worried about the development of her oldest child, Josh, while she was still pregnant with him. But doctors disregarded her concern, attributing it to first-time parent naiveté. However, she and John continued to worry after Josh was born, and
Community Spotlight: Scurria Family Read More »
