Latest News
Invitae Partners with Biogen to Offer Free Genetic Testing for SMA
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 […]
Dr. Richard Finkel, M.D., Honored with the American Academy of Neurology’s 2018 Sidney Carter Award in Child Neurology
Richard Finkel, M.D., the chief of neurology at Nemours Children’s Hospital in Orlando, Fla., was honored with the American Academy of Neurology’s 2018 Sidney Carter Award in Child Neurology, in […]
AveXis to Present Phase 1 Data at the 70th American Academy of Neurology Annual Meeting
The Phase 1, open-label, dose-escalation trial was designed to evaluate the safety and tolerability of AVXS-101 in patients with SMA Type 1. The key measures of efficacy were the time […]
SMA Community Leaders to Gather in Washington DC to Network, Learn and Advocate
On Thursday, April 26, more than 70 chapter leaders, event organizers and board/committee members, representing 24 states and DC, will gather in Washington DC for two days of networking, learning, […]
The Discovery of Spinraza
SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein—called survival motor neuron protein or SMN protein—that […]
There is Still Time to Complete Cure SMA’s 2018 Community Survey
Dear Members of the SMA Community, For the past several years, we’ve been working to collect data and information on our community’s experiences, goals, hopes, and challenges. We know that […]