Community Spotlight: Chan Family

Leave a Comment / Community Spotlight, Front Page News /

Ten-year-old Brady Chan from North Carolina has big goals that stem from his passion for video games. He is part of an e-gaming team, where his favorite games include “Brawl Starts” and “Overwatch.” In the future, Brady hopes to become an engineer and create his own video games. He is already learning to code! Brady and his younger brother, Lucas, also love to travel, and Brady hopes to visit France and Japan. “We are always […]

Community Spotlight: Chan Family Read More »

Cure SMA Launches New Teen & Adult Independence Assistance Package – Check It Out Today!

Leave a Comment / Front Page News, Support & Care /

Along with funding SMA research and care, Cure SMA provides thousands of individuals with SMA and their families with vital support and resources that help them navigate life with SMA. Following a successful 2018 launch of, and sustained interest in, our current Teen & Adult Support Package, Cure SMA is thrilled to offer a supplemental

Cure SMA Launches New Teen & Adult Independence Assistance Package – Check It Out Today! Read More »

Cure SMA-Funded Researchers at Ohio State University Publish Paper on Effect of Nusinersen in Adults with SMA

Leave a Comment / Front Page News, Research /

Dr. Bakri Elsheikh and colleagues at The Ohio State University have published a paper in the Journal, Frontiers in Neurology, titled “Safety, Tolerability, and Effect of Nusinersen in Non-Ambulatory Adults with Spinal Muscular Atrophy.” This project, funded by Cure SMA, investigated the safety, tolerability, and treatment effect of nusinersen treatment in non-ambulatory adults with SMA. Non-ambulatory individuals

Cure SMA-Funded Researchers at Ohio State University Publish Paper on Effect of Nusinersen in Adults with SMA Read More »

Community Statement: Quarterly Update from Novartis Gene Therapies

Leave a Comment / Front Page News, Industry Updates /

Dear Members of the SMA Community, Novartis Gene Therapies is committed to working with our partners in the SMA community to make a difference in the diagnosis, treatment, and care of those with SMA.  Through our engagement with you directly, and through our collaborations with Cure SMA, together we can make a difference. We are

Community Statement: Quarterly Update from Novartis Gene Therapies Read More »

Community Spotlight: Elizabeth Lockwood 

Leave a Comment / Community Spotlight, Front Page News /

In honor of National Volunteer Month in April, Cure SMA has shared stories and quotes from volunteers who support our programs and further grow our community. Cure SMA is incredibly grateful for the  volunteers who keep this organization strong.   Elizabeth Lockwood is a grandmother. Her grandchildren are Emma and Nick, both young adults with spinal muscular atrophy (SMA). Like most in the community, Elizabeth had

Community Spotlight: Elizabeth Lockwood  Read More »

Cure SMA-Funded Researchers at Columbia University Publish Paper on Fatigue in SMA

Leave a Comment / Front Page News, Research /

Dr. Jacqueline Montes and colleagues at Columbia University—part of the Pediatric Neuromuscular Clinical Research Network (PNCRN) funded by Cure SMA—have published a paper in the journal Annals of Clinical and Translational Neurology, titled “Diminished muscle oxygen uptake and fatigue in spinal muscular atrophy.” This project, funded through the PNCRN, was an observational study evaluating muscle oxygen update

Cure SMA-Funded Researchers at Columbia University Publish Paper on Fatigue in SMA Read More »

Community Statement from Novartis Gene Therapies

1 Comment / Clinical Trials, Front Page News, Industry Updates /

Dear SMA Community, Novartis Gene Therapies is committed to working with our partners in the SMA community to make a difference in the diagnosis, treatment, and care of those affected by SMA. We would like to announce that we will initiate SMART, a Phase 3b clinical study to further evaluate the safety and efficacy of

Community Statement from Novartis Gene Therapies Read More »

Cure SMA Attends Spring 2021 Professional Organization Conferences to Promote Findings from Industry Collaboration Initiatives

Leave a Comment / Front Page News, Research /

Cure SMA is pleased to announce its participation in the 2021 Muscular Dystrophy Association (MDA) Virtual Clinical & Scientific Conference (March 15-18, 2021) and the American Academy of Neurology (AAN) 2021 Virtual Annual Meeting (April 17-22, 2021). Poster presentations at these meetings feature data from research initiatives launched by the Cure SMA Industry Collaboration (SMA-IC).

Cure SMA Attends Spring 2021 Professional Organization Conferences to Promote Findings from Industry Collaboration Initiatives Read More »

Genentech Shares New Evrysdi Data on Improved Motor Function and Survival in Babies with SMA Type 1

Leave a Comment / Clinical Trials, Front Page News, Industry Updates, Research /

Genentech, a member of the Roche Group, has shared new 2-year data from Part 2 of FIREFISH, a Phase 2/3 global study evaluating Evrysdi (risdiplam) in infants aged 1-7 months at enrollment with symptomatic Type 1 SMA. The data showed Evrysdi continued to improve motor function between months 12 and 24, including the ability to

Genentech Shares New Evrysdi Data on Improved Motor Function and Survival in Babies with SMA Type 1 Read More »

Biogen Shares New Spinraza Data Exploring Opportunities to Improve Outcomes for SMA Patients

Leave a Comment / Clinical Trials, Front Page News, Industry Updates, Research /

Biogen has shared new data from the Spinraza (nusinersen) clinical development program aimed at optimizing outcomes for people with SMA and advancing understanding of the disease. Exploring Opportunities to Optimize Treatment in SMA Building on the proven efficacy and well-established safety of Spinraza in a broad range of patients with SMA, the Phase 2/3 DEVOTE study is evaluating the

Biogen Shares New Spinraza Data Exploring Opportunities to Improve Outcomes for SMA Patients Read More »

Scroll to Top