In advance of U.S. Senate consideration of H.R. 1, Cure SMA wrote to U.S. Senate leaders to highlight the importance of Medicaid to children and adults with spinal muscular atrophy (SMA) and to share...

On May 22, the U.S. House of Representatives narrowly approved comprehensive legislation (H.R. 1) that includes significant changes and cuts to Medicaid, a federal program that many individuals with...

On May 14, a key U.S. House committee approved a proposal that, if finalized, would greatly reduce federal funding to Medicaid. Below is a high-level summary of the proposed Medicaid changes and what...

Thanks to a special invitation from the Trump Administration, Cure SMA hosted a family with spinal muscular atrophy (SMA) at the 2025 White House Easter Egg Roll on Monday, April 21. The White...

On March 27, U.S. Health and Human Services Secretary Robert F. Kennedy, Jr. announced plans to restructure agencies and activities within the U.S. Department of Health and Human Services (HHS),...

To address the chronic health needs of individuals with spinal muscular atrophy (SMA), Cure SMA and the SMA community have launched a new advocacy campaign in support of federal research for SMA...

2024 has been a game-changer for making transportation more accessible for people with SMA and other disabilities. Major steps have been taken to ensure everyone can travel safely and with dignity,...

This week, Congress unanimously approved a top Cure SMA caregiving priority to make it easier for individuals with spinal muscular atrophy (SMA) and others to find information about state caregiving...

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 muscular atrophy (SMA) and their families...

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 safe accommodations for air travelers with disabilities...

Thanks to a special invitation from President Joe Biden and First Lady Jill Biden, Cure SMA hosted three families with spinal muscular atrophy (SMA) at the White House on October 30 for a special...

Thanks to the advocacy of individuals with spinal muscular atrophy (SMA), a key SMA community recommendation to increase information about state caregiving options won the approval of a powerful...

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 reception at the White House. The event...

In recognition of the anniversary of the Americans with Disabilities Act (ADA), the Biden Administration hosted a Disability Pride Month event featuring an entertainer with spinal muscular atrophy...

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 Health (NIH) to support new...

A key congressional committee this week examined a Cure SMA-supported proposal to modernize the Supplemental Security Income (SSI) program to promote work, economic independence, and the ability for...

A key congressional subcommittee approved legislation that would help address a key caregiving-related challenge faced by individuals with SMA and their families. The U.S. House Energy and Commerce...

U.S. Department of Health and Human Services Press ConferenceCure SMA participated in the Washington, DC event where the U.S. Department of Health and Human Services (HHS) announced historic action...

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 travelers with spinal...

This week, new legislation was introduced in Congress to help expand caregiving services for people with disabilities and to help strengthen the care workforce. The Long Term Care Workforce Support...

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 a major legislative...

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 state and federal...

Cure SMA provided public comments on two federal regulatory proposals aimed at improving accessibility for people with SMA and other disabilities. The U.S. Department of Justice (DOJ) proposed...

Yesterday, the Senate Commerce, Science and Transportation Committee voted on key legislation that decides the future of aviation. The bipartisan bill was passed by the committee, and contained key...

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 addition of Hawaii at the start of 2024.You made this...

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 reception, an annual...

More than 110 adults with SMA and families of children with SMA from across the country traveled to Washington, DC to educate their Members of Congress and their staff about SMA and the unmet...

On July 27th, the U.S. Senate Appropriations Committee supported a Cure SMA-requested provision asking the National Institutes of Health (NIH) to address unmet needs of individuals with spinal...

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 short- and long-term action...

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 aviation bill that includes a section...

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 and other...

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 systems in power...

Cure SMA completed a week of in-person lobbying on Capitol Hill to highlight the air travel experiences and recommendations of individuals with spinal muscular atrophy (SMA) and their families...

The air travel challenges of people with disabilities took center-stage this week in Congress through two separate congressional hearings. Cure SMA used the congressional action to once again...

Despite federal laws and protections aimed at improving air travel for people with disabilities, a new report from Cure SMA highlights that the air travel experience for most individuals and families...

Individuals with SMA and their families can learn how to advocate with their Members of Congress more effectively on issues important to them and the SMA community in a new advocacy 101 video series...

Individuals with spinal muscular atrophy (SMA) who utilize power wheelchairs for their mobility agree that seat elevation, which allows an individual to adjust their wheelchair seat, helps improve...

Congress has recognized the unmet and new needs of individuals with SMA by including legislative language in must-pass legislation asking the National Institutes of Health (NIH) to continue research...

A bipartisan group of U.S. Senators attempted to increase the asset limits in the Supplemental Security Income (SSI) program in legislation related to retirement savings. SSI is a federal program...