About Federal Appropriations (Funding)

Why we are in DC every year for federal appropriations (funding)

In 2001 Congress enacted the Muscular Dystrophy Community Assistance, Research and Education (MD- CARE) Act, which dramatically transformed efforts to combat Duchenne and other forms of Muscular Dystrophy. As a result of this law and subsequent amendments, federal commitments to research has expanded, spurring scientific breakthroughs to develop potential therapies. These commitments have also leveraged significant non-federal funding from academic institutions, industry, and venture investors in a true public-private partnership model.  In addition to research breakthroughs, the MD-CARE Act has helped to capture important data about the incidence and prevalence of Duchenne and to develop  care standards for Duchenne which have been implemented globally. These care standards have helped markedly lengthen and improve the average lifespan of individuals with Duchenne.

In short, The MD-CARE Act provides a legislative framework for federal focus and investment in the muscular dystrophies including Duchenne, but it does not PROVIDE the funding needed to achieve the goals of the framework. Because of this, every year our community heads to Washington, DC to communicate to Congress the need for continued funding for the agencies that impact Duchenne. Along with the funding, we also request that Congress include Duchenne specific “report language” which include specific priorities and guidance for Duchenne related spending.

About ‘Appropriations’

Every year Congress passes a budget for funding the federal government. The budget is passed through annual “appropriations” bills because congress appropriates the money (your tax dollars) to programs and projects for all the federal agencies. The budget includes funding for federal agencies that impact Duchenne muscular dystrophy, all are under the Department of Health and Human Services (HHS). Every year we target specific federal agencies that impact Duchenne. This year we are targeting:

Agencies we are targeting this year:

About ‘Report Language’

Along with the budget, Congress writes a report that provides direction to the agencies on how to spend the money. With that, Duchenne advocates speak with their members of Congress about including specific “report language” within the report regarding the current priorities for the Duchenne community. This way, when the agencies receive their money they can refer to the report and see what the priorities are for any given disease. This is why we are on the Hill every year!

How we get our funding request and report language included in appropriations bills

Thanks to PPMD’s Congressional champions, letters (also known as “Dear Colleague Letters”) in both the House and the Senate are crafted and sent to the Committees that oversee funding (Appropriations Committees). This is where you come in! In your virtual meetings one of your requests we will be asking members of Congress to SIGN the Duchenne FY22 Dear Colleague letter (Funding Year 2022)