Advocacy
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 […]
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’ […]
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 […]
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 […]
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 […]
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 […]
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 […]
Cure SMA Launches Newborn Screening Grassroots Advocacy Campaign for Spinal Muscular Atrophy Newborn Screening
Today, as part of the Annual SMA Conference, we announced the launch of a new grassroots advocacy campaign to implement newborn screening for spinal muscular […]
Call-to-Action: Senate Health Care Bill Released and Vote Expected Next Week
Yesterday, members of the Senate released draft text of their much awaited legislation called the Better Care Reconciliation Act (“Better Care Act”) of 2017. As […]
Cure SMA Update – Senate Healthcare Bill
The US Senate is currently working on legislation to modify the Affordable Care Act. Though details of the Senate’s plan are not yet available, legislation […]