Advocacy
Cure SMA Announces Major Newborn Screening Milestone with Addition of Two New SMA Screening States
With today’s newborn screening action by Oregon and New Mexico, Cure SMA has reached a major screening milestone for spinal muscular atrophy (SMA), with 97 […]
In Just Three Years, Cure SMA Marks Nationwide Milestone for 85% of U.S. Babies Now Screened at Birth for SMA
The organization’s grassroots efforts give thousands of families new hope by securing widespread, state-by-state screening for SMA at birth Within three years of spinal muscular […]
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 […]
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 […]
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). […]
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 […]
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 […]
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 […]
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 […]
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 […]