Advocacy
Community Spotlight: Rebecca Smith and Micah Biello
When Micah Biello was diagnosed with spinal muscular atrophy type 1, no one in his family knew about the disease. Now four years later, Micah’s […]
Read More ›Hope on the Hill Congressional Dinner Raises $200,000
The 8th Annual “Hope on the Hill” Congressional Dinner was held on Tuesday, November 27, 2018 at The Willard Hotel in Washington, DC. More than […]
Read More ›Advocacy Year-in-Review 2018
For Cure SMA, 2018 has been a year of great progress. As we continue to make strides into 2019, it is important to take a […]
Read More ›Closing out 2018 with Good News: Virginia Adopts SMA to their Newborn Screening Panel, Arizona Moves Closer to Adopting SMA Newborn Screening and Illinois Medicaid Covers Spinraza Treatment
The SMA community has multiple victories to celebrate as the year comes to an end. Thank you to all our amazing families and advocates who […]
Read More ›8th Annual “Hope on the Hill” Congressional Dinner Will Be Held Later This Month in Washington D.C.
The 8th Annual “Hope on the Hill” Congressional Dinner will be held on Tuesday, November 27, bringing together SMA families, government officials, and industry leaders […]
Read More ›Kansas Adopts SMA Newborn Screening as Several Other States Move Closer to Adoption
Progress is currently being made in several states for getting SMA added to Newborn Screening panels. We are delighted to share this news with you […]
Read More ›North Carolina to Screen Newborns for SMA Through Early Check
Early Check, a new research study led by RTI International, is now available for newborn babies in North Carolina. Early Check is a free screening […]
Read More ›Community Spotlight: Adrienne Vollmer
In May, Governor Eric Holcomb held a signing ceremony for Indiana House Bill 1017, adopting newborn screening for SMA and SCID. Dubbed “Graham’s Bill” in […]
Read More ›Community Spotlight: Allyson Henkel
My son Pete and I began advocating to have SMA added to the newborn screening panel in Pennsylvania in December of 2017. Pete was 13-years […]
Read More ›Community Spotlight: The Lasko Family
After Max began receiving Spinraza in 2017, we wanted to do our part to help ensure that children born with SMA would be diagnosed as […]
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