Community Awareness
Cure SMA Launches Benefit-Risk Survey to Address Important Issues in Treatment Access and Future Drug Approvals in SMA
For the past several years, we have been working to bring your voices, experiences, challenges and hopes to inform regulatory authorities as key decisions are […]
Read More ›Recording of the September Webinar on Spinraza Updates Now Available
A recording of last week’s webinar updating the community on Spinraza access and administration sites is now available online. A PDF of the webinar presentation is also […]
Read More ›Newborn Screening Advocacy Update
At our Annual SMA Conference in July, we announced a grassroots campaign to implement newborn screening for SMA in all 50 states. We know that […]
Read More ›2017 SMA Awareness Month Recap
The SMA community celebrated an impactful and advocacy-driven Awareness Month through a number of ways this August. Whether hosting candlelight vigils, meeting with state and […]
Read More ›Cure SMA to Host Webinar Updating the Community on Spinraza Access
On Tuesday, September 19, at 12:00pm CST (10:00am PST/11:00am MST/1:00pm EST), Cure SMA will hold a webinar updating the community on the status of Spinraza […]
Read More ›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 […]
Read More ›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 […]
Read More ›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 […]
Read More ›Cure SMA Advocacy Activities for the 2017 Year-to-Date
The first half of 2017 has been an active six months for Cure SMA and SMA advocates. Cure SMA and members of our community have […]
Read More ›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 […]
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