Many state and federal policies impact nearly all aspects of life for those affected by SMA.

Cure SMA works diligently to monitor legislative and regulatory happenings in Washington, DC and across the country to ensure that policies and programs are responsive to and reflect the needs of individuals with SMA and their families. Our team works with public policy experts and advocates in Washington and in the state capitals to keep abreast of developments impacting the SMA community. 

Visit our advocacy action center to learn about current initiatives and how you can become an advocate.

Our Legislative Goals

  • To ensure that treatments reach patients in the fastest and safest manner possible
  • To implement a national program to screen every newborn for SMA
  • To increase research funding to support research and services for individuals with SMA

Legislative Agenda

  • Federal funding for vital biomedical research
  • Policies, funding and programs related to newborn screening, healthcare coverage and Medicaid eligibility requirements. 
  • Making determinations on special education funding and policies 

Advocacy Resources

Getting Involved

Direct communication with the leadership of Congress and Federal Agencies is critically important to achieving each of our goals. 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. 

Contact the Advocacy Team

If you have questions, please contact the advocacy team at

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