December 23, 2019 / Advocacy

Advocacy Matters! Duchenne Community Requests Included in 2020 Federal Budget

Bipartisan agreement reached on funding bill includes Duchenne specific funding levels and report language advocated for by PPMD advocates!

Who says Congress can’t agree on anything? After 147 in-person meetings in Washington DC by Duchenne advocates earlier this year, and over 1,000 action alert messages sent following those meetings, we are pleased to announce several important wins for the Duchenne community in the 2020 federal spending legislation!

For fiscal year 2020, Congress will be providing $10 million for peer-reviewed Duchenne muscular dystrophy research through the Department of Defense—an increase from $3.2 M in FY19–and $6 million for the Muscular Dystrophy program at the Center for Disease Control and Prevention (CDC).

In the legislation, we also achieved our goal of including Duchenne specific report language that accompanies the spending bill, providing direction to the agencies that touch Duchenne:

  • Supports the Food and Drug Administration (FDA)’s efforts to incorporate patient experience in drug reviews and encourages the FDA to continue refining the process and improving its visibility.
  • Requests that FDA consider ways to include patient-experience information in relevant labeling and accompanying documentation to inform patient/provider decision making and payer determinations.
  • Encourages the National Institutes of Health (NIH) to significantly expand its support for research on Duchenne muscular dystrophy, particularly accelerating and optimizing the clinical trial process through novel and innovative trial designs and researching challenges associated with the advent of gene therapies for rare diseases.

Congress reinforced its support of Duchenne programs and research, and requests updates from the following federal agencies:

  • CDC on ongoing Duchenne newborn screening efforts
  • CDC on measuring uptake of new ICD-10 code for Duchenne and Becker Muscular Dystrophy (DBMD) and evaluate how DBMD patients are using health care and managing their disease
  • The Centers for Medicare and Medicaid Services (CMS) on the use of the new ICD-10 code for DBMD
  • Social Security Administration (SSA) on the rate at which persons with Duchenne and Becker Muscular Dystrophy utilize SSA programs

Thanks to all of you who reached out to your members of Congress earlier this year, either in person or from home.

PPMD is grateful to the Foundation to Eradicate Duchenne for their partnership and collaboration on all advocacy efforts!

Our work continues!  Join Parent Project Muscular Dystrophy (PPMD) and raise your voice at our Advocacy Conference in Washington, DC. To ensure this progress continues. 

Register today for 2020 Advocacy Conference in Washington DC!

Over the course of three days, scheduled visits on Capitol Hill are arranged for all attendees to meet with the offices of their Congressional members and tell their stories. People with Duchenne and their families use their voice to ensure policy makers understand the urgency and need for federal focus and funding on Duchenne care and research. 


No problem! 25 percent of our attendees every year are brand new advocates. PPMD will get you well prepared for your meetings and you will be with other experienced family advocates while on the hill.

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