Our Impact
Cure SMA-Funded Researcher, Stephen Kolb, Publishes Paper
Cure SMA-funded researcher Stephen Kolb has published a paper in the journal Annals of Neurology, on the results of a study comparing infants affected by […]
Read More ›7th Annual Hope on the Hill Congressional Dinner Achieves $1 Million Milestone
This year’s 7th Annual “Hope on the Hill” Congressional Dinner will be held on Wednesday, November 29, bringing together families, government, and industry to mark […]
Read More ›SMA Advocates Testify at Federal Newborn Screening Meeting
On Wednesday, November 8, advocates testified at the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) in support of spinal muscular atrophy newborn […]
Read More ›Fall 2017 Issue of Compass Now Available
The fall 2017 issue of Compass is now available online. This issue covers Phase II of the SMA Industry Collaboration, as well as highlights and […]
Read More ›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 ›Cure SMA Meets in Utah with State and Federal Elected Officials to Support Newborn Screening
On Tuesday, Cure SMA staff members and family advocates, and clinicians from the University of Utah, met with Senator Orrin Hatch (R-UT) to discuss newborn […]
Read More ›Cure SMA Contributes Article to a Special Issue of the Journal Gene Therapy
To celebrate the FDA approval of Spinraza, Cure SMA contributed an article to the September special issue of the journal Gene Therapy. The issue , […]
Read More ›Centers for Medicare and Medicaid Services (CMS) Survey
On August 3rd, as part of multiple days of advocacy visits, Cure SMA staff met with leaders from the Medicare division of the Centers for […]
Read More ›SMA Families and Cure SMA Staff Visit Capitol Hill for Advocacy Efforts
On August 2nd, members of the spinal muscular atrophy community kicked off SMA Awareness Month by meeting with a dozen Senate and House congressional offices […]
Read More ›RUSP Nomination for SMA Accepted into Evidence Review
The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) announced that they have accepted spinal muscular atrophy into the review process for […]
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