Advocacy

The policies that Congress debates and the laws it passes affect nearly all aspects of life for those affected by SMA.

Cure SMA works diligently to monitor legislative and regulatory happenings in Washinton, 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 you and your family. 

Some of the issues we are watching include:

  • 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

Legislative Agenda

Cure SMA is focused on three primary legislative goals:

  • Working with Congress and the FDA to expedite the drug-approval process for SMA therapies and help ensure that treatments reach patients in the fastest and safest manner possible
  • Implementing a national program to screen every newborn for SMA to ensure that babies with SMA are identified at the earliest possible moment so treatment can begin and any adverse impact of the disease can be minimized
  • Increasing federal funding for SMA research to ensure we continue to make progress in identifying effective treatments and care for all types of SMA. 

Direct communication with the leadership of Congress and Federal Agencies is critically important to achieving each of these goals. Cure SMA is continuously working to increase its presence within the U.S. House of Representatives and the U.S. Senate as well as the various health related agencies within the federal government, including the National Institutes of Health (NIH), the Health Resources and Services Administration (HRSA), the Centers for Disease Control and Prevention (CDC), and the Centers for Medicare and Medicaid Services (CMS).  In addition to the work we do within Washington, DC on your behalf, your support and participation are critical to the success of these efforts. 

Cure SMA also works in partnership with other patient advocacy and health professional groups to help promote the importance of our issues, leveraging resources, and voicing our concerns and making our requests of policymakers in a collective manner. Working collaboratively with others who share our goals helps us increase our effectiveness. 

Getting Involved

Our news section includes many recent legislative alerts. However, you can also reach out to your Representatives or Senators to voice your concerns on any number of topics important to the SMA community.

Our Targets 

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