State and federal policies impact nearly all aspects of life for those with SMA. Advocacy is critical in advancing SMA-related policies, and the voices of individuals with SMA and their families are incredibly important when reaching out to lawmakers who can have an impact on the community.

Our Legislative Goals

Our Advocacy Team actively works with key partners, including individuals with SMA and family advocates, to advance Cure SMA’s public policy agenda, including:

  • Ensure early detection and treatment for spinal muscular atrophy (SMA).

  • Ensure that young adults and adults with SMA have the supports and services they need.

  • Ensure research funding to support new treatments and therapies for all people with SMA.

  • Ensure insurance coverage for SMA treatments, therapies, and needed equipment.

Have questions? Contact the Cure SMA Advocacy Team at [email protected].

BECOME AN SMA ADVOCATE


Advocacy Info Center


ADVOCACY ACTION 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.

Cure SMA Advocacy Activities

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.

Download Newborn Screening for SMA Status Map
Download State of Newborn Screening for SMA Report


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District of Columbia

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