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.

VISIT ADVOCACY ACTION CENTER


BECOME AN SMA ADVOCATE


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



Types of Advocacy

Direct communication with state and federal lawmakers and regulators is critically important to achieving our advocacy priorities. There are many different types of ways you can advocate and share your story with an elected official, all of them are effective and important methods. This includes:

  • Phone call

  • Email

  • In-person meeting

  • Letter

  • Testimony

  • Social media

  • Media



ADVOCACY ACTION CENTER

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. You can also download the latest newborn screening state program map.