Advocacy
Congressional Action Recognizes Unmet Needs of SMA Community
This week, a key congressional committee recognized the unmet, everyday living needs of individuals with spinal muscular atrophy (SMA) by urging the National Institutes of […]
Read More ›SMA Community Advocacy Results in Key Accessible Air Travel Win
On May 16, after more than 2-years of advocacy and education by the SMA and disability communities, Cure SMA-supported legislation was signed into law making […]
Read More ›HHS Action Improves Healthcare Accessibility and Strengthens Protections against Disability Discrimination in Healthcare
The U.S. Department of Health and Human Services (HHS) today finalized a rule to increase healthcare accessibility and strengthen federal protections against healthcare discrimination based […]
Read More ›Accessible Air Travel Update – Next Steps
This week, Cure SMA urged the U.S. Department of Transportation (DOT) to strengthen and quickly implement its proposed rule on ensuring safe accommodations for air […]
Read More ›Government Funding Bill Supports New SMA Research to Address Unmet Needs
Cure SMA’s year-long advocacy campaign to educate Congress and the Administration about the unmet needs of individuals with spinal muscular atrophy (SMA) has concluded with […]
Read More ›Cure SMA Applauds DOT Proposal to Make Air Travel Safer for Wheelchair Users
Today, on Rare Disease Day, U.S. Transportation Secretary Pete Buttigieg and White House officials announced actions the U.S. Department of Transportation (DOT) plans to take […]
Read More ›New Report Highlights Caregiving Challenges of Individuals with Spinal Muscular Atrophy
Cure SMA released a national report on National Caregivers Day that chronicles the caregiving challenges experienced by individuals with spinal muscular atrophy (SMA) and recommends […]
Read More ›100% of States Now Screening Newborns for SMA
You did it! We’ve now reached our goal of 100 percent newborn screening of spinal muscular atrophy (SMA) in all 50 states with the […]
Read More ›Nevada Starts Screening for SMA – Only One State Remains!
Nevada has become the 49th state to begin screening for spinal muscular atrophy (SMA). Nevada State Public Health Laboratory officials confirmed with Cure SMA that […]
Read More ›Administration Officials & Members of Congress Highlight SMA Community Advocacy at 12th Annual Hope on the Hill Washington, D.C. Event
Two high-ranking Administration officials and several Members of Congress from key congressional committees participated in Cure SMA’s November 29th Hope on the Hill dinner and […]
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