Front Page News
Summit of Strength Program Kicks Off in Cincinnati
As a national organization comprised of 34 chapters, we know it’s important to leverage our collective strength and provide our community with personalized, local support. […]
Cure SMA Awards $300,000 Grant to Kevin Hodgetts, PhD, The Brigham and Women’s Hospital
Cure SMA has awarded a $300,000 preclinical drug discovery grant to Kevin Hodgetts, PhD, at the Brigham and Women’s Hospital, for his project, ” Pre-Clinical […]
Dr. John Kissel, Chair of Neurology at OSU Wexner Medical Center, Retires After 40 Years
Dr. John Kissel has treated patients with neuromuscular disorders from all over the United States. He specializes in spinal muscular atrophy and has been instrumental […]
Roche Releases Community Update on Risdiplam
The following is a community update from Genentech/Roche on the risdiplam (RG7916) program. Dear SMA advocacy community, As requested, we are very pleased to share […]
Cure SMA Awards $300,000 Grant to Umrao Monani, PhD, Columbia University
Cure SMA has awarded a $300,000 preclinical drug discovery grant to Umrao Monani, PhD, at Columbia University, for his project, ” Restoring function at the […]
HHS Secretary, Alex Azar, Recommends Nationwide Newborn Screening for SMA
Health and Human Services Secretary Alex Azar today approved the recommendation that newborn screening for spinal muscular atrophy be implemented nationwide. This recommendation was issued […]
SMA Newborn Screening Moves Forward in New Jersey
Earlier this month, the New Jersey State Senate Committee on Health, Human Services, and Senior Citizens unanimously approved S. 974. Introduced by Senator Troy Singleton, […]
Thank You For a Wonderful 2018 Annual SMA Conference!
Thank you to everyone who attended the 2018 Annual SMA Conference at the Hilton Anatole Hotel in Dallas, Texas! It was an impactful weekend of […]
Summer 2018 Issue of Compass Now Available
The summer 2018 issue of Compass is now available online. As part of our most recent round of funding, we’ve announced ten grants totaling $1,325,000 […]
PTC Therapeutics Announces Risdiplam (RG7916) is Well Tolerated at All Dose Levels With No Drug-Related Safety Findings
On Saturday, PTC Therapeutics, Inc. announced the presentation of updated interim clinical data from Part 1 of the FIREFISH study investigating risdiplam (RG7916) in babies […]