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 »
