State and federal policies impact nearly all aspects of life for those affected by SMA. Advocacy is critical in advancing SMA-related policies, and the voices of affected individuals are incredibly important when reaching out to lawmakers who can have an impact on the community.
Cure SMA monitors legislative and regulatory activities in Washington, D.C. and across the country to ensure that policies and programs are responsive to and reflect of the needs of individuals with SMA and their families. Our Advocacy Team actively works with key partners, including SMA family advocates, to advance Cure SMA’s public policy agenda.
Getting Involved
In addition to the work our Policy and Advocacy Team does to represent you in Washington D.C. and in the states, your support and participation are critical to the success of these efforts.
Have questions? Contact the Cure SMA Advocacy Team at [email protected].
Our Legislative Goals
Ensure early detection and treatment for SMA
Ensure that young adults and adults living with SMA have the supports and services they need
Ensure research funding to support new treatments and therapies for the entire SMA population
Ensure insurance coverage for SMA treatments, therapies and equipment
Advocacy Information Center
Advocacy Information Center
Below please find some advocacy resources for your use and advocacy actions that Cure SMA has taken on behalf of the SMA community.
Advocacy Resources
- Newborn Screening Fact Sheets by State
- Newborn Screening Anniversary
- COVID-19 Information Center
- Cure SMA Advocacy Action Center
Cure SMA Advocacy Activities
- November 6: Cure SMA/Other National Organizations Sign Letter of Concern Over American Airlines Wheelchair Weight Limit
- October 23: Cure SMA/Other National Organizations Seek Protections for People with Disabilities in Vaccine Allocation
- September 25: Cure SMA Letters to State Governors Regarding COVID-19 Vaccination for SMA Community
- August 25: Cure SMA Seeks Priority Access for COVID-19 Vaccines for SMA Community
Find Your State Fact Sheet
Our state fact sheets include information about the impact of SMA on that state, disease and treatment options, as well as the status of newborn screening activities. Download the fact sheet for your state below and share in your advocacy efforts with legislators, media, event attendees, or other community outreach.