Advocacy

Cure SMA Caregiving Priority Signed into Law

January 6, 2025
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On January 4th, 2025, President Biden signed the Think Differently Database Act (H.R. 670) into law, marking a significant legislative victory for the SMA community. […]

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Cure SMA Advocacy Highlights of 2024

December 20, 2024
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As 2024 draws to a close, Cure SMA reflects on an extraordinary year of advocacy milestones that have advanced the priorities of individuals with spinal […]

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Cure SMA Celebrates New DOT Rule for Accessible Air Travel

December 17, 2024
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Cure SMA is thrilled to share a major win for the SMA community: the U.S. Department of Transportation (DOT) has finalized its rule on ensuring […]

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SMA Community Advocacy Wins and Champions Celebrated at Cure SMA Event

November 20, 2024
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Individuals with spinal muscular atrophy (SMA) and their families recognized congressional champions and celebrated advocacy progress at Cure SMA’s Hope on the Hill event. U.S. […]

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Celebrating Disability Pride and the 34th Anniversary of the ADA at the White House

September 11, 2024
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This week, Cure SMA and advocates with SMA celebrated Disability Pride and the 34th Anniversary of the Americans with Disabilities Act (ADA) with a special […]

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Congressional Action Recognizes Unmet Needs of SMA Community

July 12, 2024
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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 […]

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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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