Advocacy
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 […]
Read More ›Cure SMA on Capitol Hill – A Message from Allie Williams
Hey, it’s Allie here from Oklahoma! I am privileged to serve on the Cure SMA Adult Advisory Council and am part of a group of […]
Read More ›Key Congressional Committee Urges NIH to Address Unmet Needs of Individuals with SMA
On July 27th, the U.S. Senate Appropriations Committee supported a Cure SMA-requested provision asking the National Institutes of Health (NIH) to address the unmet needs […]
Read More ›New DOT Rule Will Require Truly Accessible Lavatories on New Single Aisle Aircraft
On the anniversary of the Americans with Disabilities Act, the U.S. Department of Transportation (DOT) announced a final rule that will require airlines to take […]
Read More ›Big Week in Washington for Cure SMA-Supported Legislation
This week, bills to address everyday challenges faced by individuals with spinal muscular atrophy (SMA) took important steps forward in the U.S. Congress. A key […]
Read More ›Congressional Committee Approves Legislation to Improve Air Travel for People with SMA and other Disabilities
This week, a key committee in the U.S. House of Representatives unanimously approved (63-0) aviation legislation that will make air travel more accessible for individuals with SMA […]
Read More ›Cure SMA Applauds Federal Agency Decision that Should Lead to Better Insurance Coverage for Seat Elevation Systems in Power Wheelchairs
Thanks to the advocacy of individuals with spinal muscular atrophy (SMA) and others, the Centers for Medicare and Medicaid Services (CMS) now considers seat elevation […]
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