Advocacy
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 […]
Read More ›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 […]
Read More ›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 […]
Read More ›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 […]
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 ›Update: President’s Budget Proposes Significant Cuts to Federal Health Programs That Are Critically Important to SMA Patients and Families
The President recently released his detailed budget proposal for Fiscal Year 2018, which proposed significant funding cuts to numerous federal programs, including many that have […]
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