Advocacy
Community Spotlight: Xavier and Rose’s SMA Diagnosis
Carrie Menke is a South Dakota native who resides in Sioux Falls with her husband Tony and their four children — Xavier, Colette, Avila, and […]
Read More ›Spring 2019 SMA Newborn Screening Update
We are thrilled to announce that Missouri, Pennsylvania and Vermont have now implemented permanent statewide SMA newborn screening, making 6 states that are now permanently […]
Read More ›Cure SMA Advocates for SMA Community at ICER Hearing
On Thursday, March 7, Cure SMA testified on behalf of the SMA community at a meeting of the Institute for Clinical and Economic Review (ICER). […]
Read More ›Community Spotlight: Kristen Smith
The SMA community has been lobbying state and federal government for years. Kristen Smith shares how she became involved with advocacy. Kristen Smith describes herself […]
Read More ›Arkansas and Florida Adopt SMA Newborn Screening
We are thrilled to share that both Arkansas and Florida recently adopted SMA to their state newborn screening panels! They now join the growing list […]
Read More ›Register for Cure SMA’s Advocacy 101 Webinar: Learn How to Make a Difference
On Wednesday, February 20th at 12pm CST (10am PST/11am MST/1pm EST) Cure SMA’s Policy and Advocacy team will hold a webinar to update the SMA […]
Read More ›Be A Part of Cure SMA’s Valentine’s Day Advocacy Campaign and Support the Newborn Screening Saves Lives Reauthorization Act
With Valentine’s Day rapidly approaching, we are showing our love for the Newborn Screening Saves Lives Reauthorization Act! Take action to support this very important […]
Read More ›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 […]
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