On Tuesday, September 16, about 150 adults with spinal muscular atrophy (SMA) and family members of children with SMA visited Capitol Hill to advocate for key priorities of the SMA community.
Advocates from 34 states met in-person with 155 congressional offices in Washington, DC, including 87 U.S. House offices and 68 U.S. Senate offices, to champion unmet needs for federal SMA research for more treatment breakthroughs and to defend the rights of people with disabilities.
In addition, another 130 advocacy messages from SMA community members and supporters from across the country were sent to their Members of Congress through Cure SMA’s Advocacy Action Center in support of SMA community priorities.
Together, SMA community advocates urged Congress to:
- Retain a provision in a fiscal year 2026 funding bill that recommends new federal SMA research, and
- Support bipartisan legislation that removes barriers to work, savings, and marriage for people with SMA and other disabilities.
This united effort made a powerful impact on Capitol Hill during a meaningful day of advocacy for children and adults with SMA and their families.
Advocacy Snapshot: September 16
In-Person
- Advocates: 149
- Meetings: 155
- 87 U.S. House Offices
- 68 U.S. Senate Offices
Online
- +130 messages to U.S. House and U.S. Senate Offices
(...and counting)
Thank you to everyone who raised awareness about SMA and advanced the needs and goals of the SMA community.
