On Thursday, April 26, Cure SMA traveled with more than 70 spinal muscular atrophy advocates to Washington DC to meet with congressional offices. The advocates represented 24 states and DC. The purpose of the advocacy day was to advance life-changing opportunities for our community through SMA research and newborn screening. The visits also emphasized the […]
SMA Advocates Meet With House and Senate Offices Read More »
Cure SMA has awarded a $150,000 research grant to Chad Heatwole, MD, at the University of Rochester, for his project, ” Development of a Clinically Relevant Outcome Measure for Pediatric SMA Therapeutic Trials.” Dr. Heatwole and his team are working to develop SMA-specific patient reported outcome measures for use in SMA clinical trials and clinics.
Cure SMA Awards $150,000 Grant to Chad Heatwole, MD, University of Rochester Read More »
After her son William’s SMA type 2 diagnosis in April 2001, Heidi Johnson’s doctor immediately showed her the Cure SMA (then Families of SMA) website and said to look for support within the SMA community. “After arriving home, we took the doc’s advice and opened up [the website] where we felt the most amazing support.
Uniting the SMA Community Through Local Programs and Support Read More »
Invitae Corporation recently announced that it will partner with Biogen to offer genetic testing at no charge to patients who may have spinal muscular atrophy (SMA). The program is called SMA Identified, and is intended to more quickly diagnose patients who may have SMA, or confirm a clinical diagnosis of SMA. The test also reports
Invitae Partners with Biogen to Offer Free Genetic Testing for SMA Read More »
