Community Awareness
SMA Documentary Premieres at 2017 Rhode Island International Film Festival
Life & Atrophy, a film about SMA, premiered at the Rhode Island International Film Festival on Saturday, August 12th. It was directed, produced, edited and […]
August is SMA Awareness Month!
The SMA community officially recognizes August as Spinal Muscular Atrophy Awareness Month, an effort that Cure SMA has been coordinating since 1996. Throughout August, the […]
SMA Newborn Screening Moves Forward in Missouri and Florida
The spinal muscular atrophy community is celebrating significant progress toward adding SMA to newborn screening panels in two states. Missouri to Become the First State […]
SMA Community’s Voice Heard “Loud and Clear” at Last Week’s Patient Focused Drug Development Meeting with the FDA
On April 18, 2017, the SMA community—families, clinicians, researchers, industry and regulators—gathered for a Patient-Focused Drug Development (PFDD) Meeting with the FDA. As part of […]
Cure SMA to Host Webinar on Spinraza Access, as List of Administration Sites is Released
On Thursday, May 4, at 1:00pm EST (10:00am PST/11:00am MST/12:00pm CST), Cure SMA will hold a webinar updating the community on the status of Spinraza […]
Cure SMA Publishes Second Journal Article on the Patient Voice
Cure SMA, along with collaborators from Biogen and the SMA Foundation, have published a paper in the journal BMC Neurology. In recent years, we’ve completed […]
Know Your Resources: How Congressional Caseworkers Can Help You Obtain Insurance Coverage for New Therapies
Your elected officials who represent you in Washington, D.C. have caseworkers in their regional and district offices in your communities. These caseworkers can help you […]
Cure SMA to Host Webinar with the FDA and Patient Advocates
Cure SMA is pleased to announce a new webinar on interactions between the FDA and the SMA community. The webinar will be held on March […]
Spinraza Access Update Webinar
On Tuesday, February 14, at 1:00pm EST (10:00am PST/11:00am MST/12:00pm CST), Cure SMA hosted a webinar updating the community on the status of Spinraza access. […]
Cure SMA Launches Community Survey to Address Urgent and Important Issues in SMA Treatment
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 the […]