This article is part of a series of Cure SMA grant announcements that will be shared throughout the next couple of months. Cure SMA has awarded a $170,000 research grant to Lyndsay Murray, Ph.D., at the University of Edinburgh, for her project titled, “Developing strategies to support enlarged motor units following SMN restoration in mouse […]
To help clinicians and the families they serve in the decision of when to administer therapy to infants identified with SMA via newborn screening, Cure SMA convened a working group comprised of 15 SMA experts to develop treatment guidelines. These guidelines, “Treatment Algorithm for Infants Diagnosed with Spinal Muscular Atrophy through Newborn Screening,” were originally
Cure SMA is pleased to announce the release of “Spotlight on SMA: The Urgent Need for Early Diagnosis in Spinal Muscular Atrophy,” a supplement developed in collaboration with Neurology Reviews. The goal of this partnership is to enhance current awareness and understanding of SMA diagnostic requirements, while emphasizing the importance of early treatment as it
Cure SMA Launches “Spotlight on SMA” Partnership with Neurology Reviews Read More »
This year, Rare Disease Day occurs on February 29—the rarest day of all! Spinal muscular atrophy (SMA) affects 12,000 people in the U.S. Yet, the SMA community is part of a greater community—the rare disease community—that comprises of 300 million people worldwide. Together, we create an even stronger voice to raise awareness and educate others
Celebrate Rare Disease Day 2020 with Cure SMA Read More »
Cure SMA is excited to support casting directors from NBC as they search for boys and girls from the SMA community who are interested in playing a character with spinal muscular atrophy in an upcoming 20th Century Fox pilot. The team is currently focusing their search on children aged 7-11 years of age in the Chicagoland
Lights…Camera…Action! Search Is On for Child with SMA to Appear in NBC Television Pilot Read More »
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 »
