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. From policy wins to meaningful events, we celebrate the SMA community for their role in the following highlights:
100% of States Screening Newborns for SMA
The year began with a monumental achievement—100% of states now screen newborns for SMA. This milestone ensures that U.S. babies born with SMA in any of the 50 states will receive an early diagnosis, allowing their families to make timely decisions about treatments. Early diagnosis and timely access to an SMA treatment saves lives and increases health outcomes.
Caregiving Challenges Report Released
Cure SMA published a comprehensive report highlighting the caregiving challenges faced by individuals with SMA. This critical research has amplified awareness and influenced legislation being considered in Congress aimed at addressing the caregiving needs of individuals with SMA and other disabilities.
Advancing Accessible Air Travel
This year marked significant progress in the fight for accessible air travel. Cure SMA’s advocacy efforts contributed to a key air travel victory in the FAA Reauthorization Act, which includes provisions to improve wheelchair accessibility and enhance passenger safety. Additionally, the U.S. Department of Transportation (DOT) released a groundbreaking rule to make air travel safer for wheelchair users. Together, these advancements represent a major step toward ensuring equitable and dignified travel for individuals with SMA and we will not stop until the ultimate goal of a wheelchair spot on airplanes is realized.
Promoting New SMA Research at the NIH
Congressional advocacy efforts resulted in a crucial win for the SMA community, with lawmakers urging the National Institutes of Health (NIH) to prioritize research addressing the unmet needs of individuals with SMA. Individuals with SMA and their families were critical to the success of this campaign by describing their personal challenges through surveys and stories and sharing their treatment goals to improve their quality of life Cure SMA will continue to collaborate with the NIH and other stakeholders to drive meaningful progress in SMA research.
SMA Community Advocacy at Federal and State Levels
Through Cure SMA’s grassroots advocacy tools and do-it-yourself (DIY) resources, SMA community advocates educated federal and state lawmakers in all 50 states and Puerto Rico about the priorities of the SMA community. In 2024, more than 24,000 online messages and letters were sent to elected leaders and dozens of virtual and in-person meetings were conducted by Cure SMA and SMA community advocates. This collective advocacy resulted in legislative wins related to air travel and SMA research and new sponsors and champions for other SMA community legislative priorities.
White House Engagement
Cure SMA and SMA families participated in multiple White House events throughout the year, including:
- the Americans with Disabilities Act (ADA) 34th anniversary celebration
- Disability Pride Month celebrations
- The annual Easter Egg Roll
- Hallo-Read festivities
- The Paralympics Open House
- Soldier Ride with the Wounded Warrior Project
These visits elevated awareness of SMA and highlighted the strength of our community.
13th Annual Hope on the Hill
This year's Hope on the Hill event featured prominent speakers including U.S. Representatives Sam Graves (MO), Pete Stauber (MN), and Mark DeSaulnier (CA), U.S. Senators Tammy Baldwin (WI) and Shelley Moore Capito (WV), and Dr. Joni Rutter, Director of the NIH National Center for Advancing Translational Sciences. The event drew an impactful audience, including the largest group of adults with SMA in recent years.
Looking Ahead
As we celebrate these accomplishments, we remain committed to advancing the needs of the SMA community. Your continued advocacy and partnership will be needed to build off these successes and to address the remaining priorities of the SMA community. As the Cure SMA advocacy team always says, advocacy is a team sport! Thank you for being a part of this journey.