PPMD Advocates Ensure Duchenne Research Pipeline to Benefit from Congress’s “Omnibus Spending Package"

In the wee hours of this morning, Congressional leaders released the text of a massive spending bill (called the “Omnibus Spending Package”) that will fund the government for the remainder of Fiscal Year 2016, which runs through the end of September 2016. PPMD is very pleased that this bill contains a number of provisions that will benefit the Duchenne community, due in large part to the advocacy efforts of our active and powerful community. Thank you to each member of our PPMD community who participated in congressional outreach efforts online, through phone calls, and through visits to your elected officials both in Washington, DC and in your home districts – our Duchenne community continues to be heard.


Perhaps most excitingly, Congress has recognized the value of medical research supported by the National Institutes of Health (NIH) by providing an increase of $2 billion for the NIH in FY 2016. This is a significant increase unseen in recent years and is good news for the Duchenne/Becker community and other stakeholders as it means the NIH will have more resources to support meritorious research. For example, the National Institute for Neurological Disorders and Stroke (NINDS), one of the major funders of Duchenne research at the NIH, will have an FY 16 budget of $1.696 billion, up from $1.605 billion in FY 15, and another significant funder of Duchenne/Becker research at NIH, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) will receive $542 million, up from $521.5 million in FY 15. PPMD looks forward to continuing to work with our program offices and leaders at the NIH to grow the amount of funding committed to Duchenne and Becker research in FY 16 and beyond. Stay tuned for more information about new collaborations being led by PPMD with NINDS, NIAMS, and other NIH partners that will directly benefit our community.


Beyond the increase in funding for the NIH, the bill includes $6 million to continue the muscular dystrophy program at the Centers for Disease Control and Prevention (CDC). This program has, over the years, been extremely valuable to our community by tracking prevalence of Duchenne through the MD STARnet project and by leading the development and dissemination of care considerations. The updated Duchenne/Becker Care Considerations will be published and disseminated in 2016 and PPMD is working closely with the CDC on these efforts.


Additionally, the bill includes $3.2 million to continue funding the Congressionally Directed Medical Research Program for Duchenne out of the Department of Defense.


PPMD applauds the thousands of advocates who have taken action at numerous times during the year to ensure this outcome. And we encourage all families to attend PPMD's 2016 Advocacy Conference. We continue to effect change in D.C., and we need your voice.

We also thank our many champions and supporters in Congress, particularly Senators Roger Wicker and Debbie Stabenow and Representatives Doris Matsui and Peter King, who led this year’s appropriations request letter.

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