Dear Members of the SMA Community, Each year, the entire rare disease community comes together on the last day of February to recognize and raise awareness for the 300 million people worldwide, including 25-30 million Americans, impacted by a rare disease like SMA: that is one in 10 Americans, and more than […]
Biogen SMA Q1 2021 Community Statement Read More »
February 28 is Rare Disease Day. Throughout the month—in recognition of our Redefining Rare initiative—we have been posting stories about SMA community members, showcasing their greatest passions, hobbies, and tidbits of their life. Viola Dwyer is from a suburb of Philadelphia and recently pivoted from her corporate job in the financial sector to creating a
Community Spotlight: I am…Viola Dwyer Read More »
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. This guest post is written by Jessica Hoefler whose daughter, Piper, passed away in May 2020, shortly after being diagnosed with SMA
Jessica’s Story: Remembering Piper Grace Read More »
Genentech, a member of the Roche Group, announced in a press release that Evrysdi™ (risdiplam) data from the dose finding Part 1 of the pivotal FIREFISH study in infants with symptomatic Type 1 spinal muscular atrophy (SMA) were published in the February 24, 2021 online issue of the New England Journal of Medicine (NEJM). The data show
Results from Genentech’s Evrysdi Study in Infants with Type 1 SMA Published in NEJM Read More »
Adults with spinal muscular atrophy (SMA) are invited to take advantage of Cure SMA’s latest support resource, the Adults with SMA Virtual Therapy Program, which has been generously sponsored by Genentech and the Dhont Family Foundation. The Adults with SMA Virtual Therapy Program provides adults with SMA three complementary, 30-minute live video sessions with a
Cure SMA Launches Virtual Therapy Program for Adults with SMA Read More »
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 »
