February 28 is Rare Disease Day. Throughout the month—in recognition of our Redefining Rare initiative — we will be posting stories about SMA community members, showcasing their greatest passions, hobbies and tidbits of their life. Kelsey Roberts is a determined, kind, and passionate 18-year-old from Massachusetts. As a teenager, she was diagnosed with spinal muscular […]
Community Spotlight: I Am…Kelsey Roberts Read More »
Over the past year and a half, we hope that you have found this page to be a helpful resource as you navigated the COVID-19 pandemic. As we seek to come out the other side and begin to re-engage with our family, friends, and communities, know that Cure SMA’s work for the SMA community continues.
Cure SMA Coronavirus (COVID-19) Information Center Read More »
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 »
New developments in treatments for spinal muscular atrophy (SMA) over the last few years have changed what is possible for people with SMA, allowing them to achieve new developmental milestones. However, these treatment advances have also raised new questions for the community, including whether combining treatments is safe and offers additional efficacy. To better understand the
Cure SMA Offer Perspectives on Combination Therapy for SMA Read More »
You can get a head start on your healthy New Year’s resolutions and sign up today for our 2021 Team Cure SMA endurance race series! Team Cure SMA is an endurance program that connects runners and cyclists with Cure SMA. Over the last two years, Team Cure SMA athletes from across the country have trained
Team Cure SMA Launches 2021 Race Series for Full SMA Community Read More »
With consideration of the current COVID-19 pandemic and beyond, Cure SMA continues to advocate for the importance of overall health and wellness. Therefore, we are pleased to announce we will be hosting a new three-part educational program, the Wellness Webinar Series, sponsored by Genentech. All members of the spinal muscular atrophy (SMA) community are invited
Cure SMA to Host Webinar Series on Wellness for the SMA Community Read More »
Dear SMA Community, While 2020 did not pan out as we had expected, Cure SMA remains extremely optimistic about the future for our community in 2021 and beyond. Here are the reasons why: Research and Treatment The research Cure SMA funds continues to expand our knowledge of SMA and deliver treatment opportunities, as reflected in
Cure SMA’s New Year Letter for 2021 Read More »
Dear SMA Community, As 2020 draws to a close, we want to provide an overview of our recent work in the community over the fourth quarter and updates related to clinical studies of Evrysdi™ (risdiplam), which was approved earlier this year for the treatment of spinal muscular atrophy (SMA) in people 2 months of age
Genentech End-of-Year Community Statement Read More »
