Cure SMA is excited to share that the platform for the 2021 Virtual SMA Conference and 2021 Virtual SMA Research & Clinical Care Meeting is officially open! Sessions will kick off tomorrow, Monday, June 7th and run through Friday, June 11th, with a few additional social events trickling into the following week. There is still […]
Ready to Go! Platform Open for 2021 Virtual SMA Conference Events Read More »
In a May 2021 issue of BMC Pediatrics, Cure SMA published a manuscript, titled “Awareness screening and referral patterns among pediatricians in the United States related to early clinical features of spinal muscular atrophy (SMA).” The purpose of the manuscript was to describe the findings of two healthcare provider surveys launched in 2018 and 2019,
Cure SMA is excited to announce that we will reunite the SMA community in-person for the 2022 Annual SMA Conference in Anaheim, CA–Thursday, June 16 through Sunday, June 19, 2022. If the unexpected circumstances surrounding the pandemic have shown us anything, it is how impactful this one week of the year is for individuals, families,
Cure SMA Announces 2022 Annual SMA Conference Read More »
Doug McCullough was raised on a dairy farm in Pennsylvania and now resides in Central New Jersey. He is a self-described “fun-loving guy.” “I take my work seriously but don’t take myself too seriously,” shared Doug. Doug has been working at Johnson & Johnson for 20 years. He also has SMA Type 3 and is
Community Spotlight: Doug McCullough Read More »
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 »
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 »
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
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 »
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 »
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 »
