Advocacy

State and federal policies impact nearly all aspects of life for people with spinal muscular atrophy (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 Greater Independence agenda and the following policy goals:

  • Ensure early detection and treatment for SMA
  • Ensure young adults and adults with SMA have the support services they need
  • Ensure research funds new treatments and therapies for all people with SMA
  • Ensure full and timely access to SMA treatments, therapies, and needed equipment

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

Why Is Advocacy Important?

Advocacy Do It Yourself (DIY)

Learn how to advocate with Members of Congress more effectively on issues important to you and the SMA community in Cure SMA’s new Advocacy DIY video series.

In this Cure SMA video, you will learn how to sign up to be a Cure SMA Advocate and take your first advocacy action!

Sign Up to be an Advocate

Narrated by Jim Willison

In this short video, Cure SMA Advocacy will provide a short overview of Congress and walk you through Cure SMA’s online advocacy tool to help you identify and communicate with your own Members of Congress.  

To become a Cure SMA Advocate, go to the Cure SMA Action Center.

Narrated by Jim Willison

 In this video, Cure SMA Advocacy will share the 5 basic elements of a congressional meeting, and we will share two post-meeting tips that are often forgotten, but super important.  

To become a Cure SMA Advocate, go to the Cure SMA Action Center

Narrated by Jim Willison

In this video, Cure SMA Advocacy will take you inside a typical Washington DC congressional office to explain key staff positions, their roles inside that office, and how you, as a Cure SMA advocate, can work with congressional staff to educate and advocate in support of SMA community priorities.  

To become a Cure SMA Advocate, go to the Cure SMA Action Center

Narrated by Jim Willison

In this video, Cure SMA Advocacy will discuss the role of committees, highlight leadership positions within committees, and identify committees that matter most to the SMA community. 

To become a Cure SMA Advocate, go to the Cure SMA Action Center

Narrated by Jim Willison

In this video, Cure SMA Advocacy will walk you through the steps for requesting a congressional meeting and share tips for running an effective meeting.

To become a Cure SMA Advocate, go to the Cure SMA Action Center

Narrated by Jim Willison

SMA Advocacy Issues Toolkit

Cure SMA’s advocacy agenda was developed in response to direct feedback from the SMA community. We collected ideas from active members of the SMA community and then used a survey to establish our top priorities. As a result, we have created the toolkit below to help anyone advocating for these important issues during the 118th Congress. Click on the images below for information on each key priority and Cure SMA’s position.

Education

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.

Advocacy_image_v2

Cure SMA Advocacy Activities

Below please find some advocacy resources for your use and advocacy actions that Cure SMA has taken on behalf of the SMA community.

Find Your State Fact Sheet

Our state fact sheets include information about SMA and its prevalence in your state as well as updates on treatments, care centers, and volunteer chapters. Hover over the map to find your state fact sheet.

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