Advocacy
Federal Committee to Vote on Spinal Muscular Atrophy Newborn Screening on Thursday
On Thursday, February 8, the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC), a federal committee that oversees newborn screening, will vote on […]
Read More ›SMA Industry Collaboration Releases Spinal Muscular Atrophy Voice of the Patient (VoP) Report
Cure SMA and our partners in the SMA Industry Collaboration are pleased to announce the release of the Spinal Muscular Atrophy Voice of the Patient […]
Read More ›Cure SMA Launches Advocacy Action Network
Working together, we’ve achieved tremendous success in advocating for ourselves, our families, and our whole community, particularly in the past few years. Today, we’re building […]
Read More ›Minnesota Becomes Second State to Adopt Newborn Screening for SMA
On December 27, the Minnesota Commissioner of Health accepted the recommendation of the state’s Advisory Committee on Heritable and Congenital Disorders to add SMA to […]
Read More ›Cure SMA Advocates Continue to Advance Newborn Screening Efforts
SMA advocates across the country are working tirelessly with Cure SMA to educate state decision makers on newborn screening. In Maryland and Minnesota, the states’ […]
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 ›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 ›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 ›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 ›Missouri is the First State to Institute Newborn Screening for Spinal Muscular Atrophy
Governor Eric Greitens today signed into law Missouri Senate Bill 50, instituting newborn screening for spinal muscular atrophy (SMA). The bill makes Missouri the first […]
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