Advocacy

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

Congress’s responsibilities include:

  • Providing funding for vital biomedical research
  • Setting policies related to newborn screening, healthcare coverage, and Medicaid eligibility requirements
  • Making determinations on special education funding and policies

It is important that the SMA community stay informed and involved to make their voice heard on these and other legislative issues of importance. 

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
  • Implementing a national program to screen every newborn for SMA
  • Increasing federal funding for SMA research

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).  Your support is critical to these efforts.

Getting Involved

We post timely legislative alerts in the news section of our site. Or, use the box below to sign up for our email list and we'll send advocacy news straight to your inbox.

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