Advocacy

SMA Community Advocacy Results in Key Accessible Air Travel Win

May 17, 2024
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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 […]

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HHS Action Improves Healthcare Accessibility and Strengthens Protections against Disability Discrimination in Healthcare

May 9, 2024
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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 […]

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Accessible Air Travel Update – Next Steps

May 1, 2024
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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 […]

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Government Funding Bill Supports New SMA Research to Address Unmet Needs

March 25, 2024
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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 […]

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Cure SMA Applauds DOT Proposal to Make Air Travel Safer for Wheelchair Users

February 29, 2024
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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 […]

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New Report Highlights Caregiving Challenges of Individuals with Spinal Muscular Atrophy

February 16, 2024
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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 […]

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100% of States Now Screening Newborns for SMA

January 3, 2024
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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 […]

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Nevada Starts Screening for SMA – Only One State Remains!

December 21, 2023
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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 […]

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Administration Officials & Members of Congress Highlight SMA Community Advocacy at 12th Annual Hope on the Hill Washington, D.C. Event 

December 4, 2023
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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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Cure SMA on Capitol Hill – A Message from Allie Williams

October 4, 2023
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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 […]

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