Search Results: Living with SMA issues
Community Spotlight: Nicole Stickane Advocates for Newborn Screening in Texas
In late July, the Texas Newborn Screening Advisory Committee held a meeting— virtually, of course —to hear an update on the status of statewide newborn […]
Community Spotlight: The Forcier Family
Kara and Ryan Forcier, of Stillwater, Minn., were on a rollercoaster almost immediately after the birth of their son, Zachary. Zachary was born with skin […]
Community Spotlight: Maria Kaloidis
Maria Eleni Kaloidis is a 22-year-old in her final year at Post University. Like most women her age, she enjoys spending time with her family […]
Community Statement from Genentech: FDA Grants Priority Review to Risdiplam for Spinal Muscular Atrophy
Genentech, a member of the Roche Group, today announced that the U.S. Food and Drug Administration (FDA) has accepted the New Drug Application (NDA) and […]
Genentech’s Risdiplam Meets Primary Endpoint in Pivotal SUNFISH Trial in People With Type 2 or 3 Spinal Muscular Atrophy
Genentech, a member of the Roche Group, today announced positive data from the pivotal Part 2 of the SUNFISH study evaluating risdiplam in people aged […]
Community Update Survey Q&A
Cure SMA recently launched the third annual Community Update Survey to address important issues in SMA treatment and care. The Community Survey covers several areas […]
Community Spotlight: Kristen Smith
The SMA community has been lobbying state and federal government for years. Kristen Smith shares how she became involved with advocacy. Kristen Smith describes herself […]
2018 Research Year-in-Review
Over our past fiscal year—from July 1, 2017, to June 30, 2018—Cure SMA has funded over $5 million in new research funding. This funding will be […]
Fall 2018 Issue of Compass Now Available
The fall 2018 issue of Compass is now available online. This issue of Compass covers the SMA Care Center Network and its goal of developing an […]
Sweet Baby Zane Funds New Equipment Pool Item
Cure SMA is excited to announce that 12 new Panthera pediatric lightweight wheelchairs have been purchased thanks to generous funding from Sweet Baby Zane. These […]