When you first learned that you or your child had SMA, you probably began analyzing your home life, your or your child’s education, and other immediate concerns. In time, you realized that the needs would continue to evolve. How would you pay for medical expenses that insurance did not cover? What types of programs would […]
Financial Planning with a Disability Read More »
Biogen Inc., today announced new research supporting the continued development of an investigational higher dose of SPINRAZA® (nusinersen) and additional data reinforcing the strength of SPINRAZA’s clinical profile in improving the lives of individuals with spinal muscular atrophy (SMA) over the long term. “Intervention with SPINRAZA can meaningfully impact the trajectory of SMA, and we
Biogen Presents New Spinraza Data at the 2021 Virtual SMA Conference Read More »
Each year at the Annual SMA Conference, the session on Aquatic Therapy is among the most popular for attendees of all ages. Jennifer Martyn, PT, is one of the leaders of this educational and fun session. Normally this time of year, Jennifer and her staff would begin ordering new gear for the pool, labeling items
Understanding the Benefits of Aqua Therapy 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
Biogen recently presented data about ongoing studies of SPINRAZA (nusinersen) in patients with Spinal Muscular Atrophy. Updates included the NURTURE, ENDEAR, SHINE, DEVOTE, and RESPOND clinical trials. Oral presentation details: Title: Predictive Factors of Nusinersen Treatment Response in Infantile-onset SMA: Results from the ENDEAR/SHINE Studies Presenter: Laurent Servais, MD, PhD Title: Nusinersen in Children with SMA Who
Nusinersen Research Updates Presented by Biogen Read More »
Current knowledge regarding clinical meaningfulness and quality of life amongst teens and young adults with spinal muscular atrophy (SMA) is limited. Much of the available qualitative data on this population has been obtained from the perspective of the parents/caregivers rather than the individuals themselves. Knowing this, Cure SMA is pleased to announce the publication of a manuscript,
Cure SMA is excited to invite all members of the SMA community to join our new, three-part Career Panel Webinar Series, generously sponsored by Biogen. During these 1-hour webinars, adults with SMA will share honest and insightful perspectives into their career journeys—from accomplishments to challenges and everything in between. Attendees will be able to submit
Cure SMA Career Panel Webinar Series to Launch in February Read More »
Cure SMA is excited to share that we will be continuing the Summit of Strength Program in 2021, offering a hybrid of the original in-person events and the webinars launched in 2020. This year marks the program’s fourth year, having brought together nearly 3,000 attendees from across the U.S. in-person, and close to 1,300 live
Cure SMA Announces 2021 Summit of Strength Program Events Read More »
There are plenty of reasons for everyone to exercise regularly, but for the spinal muscular atrophy (SMA) community, exercise has potential benefits in supporting greater muscle strength and motor function. With many still at home due to the ongoing pandemic, Cure SMA is pleased to share a new Physical Therapy Webinar Series, sponsored by Biogen
Cure SMA Launches Physical Therapy Webinar Series Read More »
