April 17, 2021


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Parent Project Muscular Dystrophy Holds Virtual Town Hall to Commemorate Progress and Chart the Future Course

Classified in: Health, Covid-19 virus
Subject: FVT

WASHINGTON, Jan. 28, 2021 /PRNewswire/ — Twenty years after the United States Senate held a hearing on muscular dystrophy that would pave the way for the enactment of the Muscular Dystrophy Community Assistance, Research and Education (MD-CARE ACT), Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), will host a virtual town hall to mark this and other milestones of the past two decades.

PPMD’s Advocacy in Action Virtual Town Hall kicks off a year of activities recognizing the foundational work of 2001 that culminated with then-President George W. Bush signing the MD-CARE Act into law (PL 107-195). The law was cosponsored by 310 members of the House of Representatives and 46 Senators.

“The February 2001 Senate hearing was a landmark event for Duchenne, Becker, and other forms of muscular dystrophy. It catalyzed our advocacy efforts that by the end of the year resulted in the MD-CARE Act becoming law,” said Pat Furlong, PPMD Founding President & CEO, who was a witness at that hearing.

“The MD-CARE Act spurred a government commitment to Duchenne, Becker, and related muscular dystrophy public health and research that had been largely non-existent. Over the past two decades, thanks to the tireless advocacy of thousands of our families, Congress has updated this law twice and passed other statutes that have helped us achieve breakthroughs that were unimaginable not long ago,” Furlong added.

On February 3rd, PPMD will host a Virtual Town Hall involving multiple Members of Congress, government health and research leaders, and Duchenne advocates. Participants include Sen. Roger Wicker (R-MS) who sponsored the original MD-CARE Act when in the House of Representatives, Sen. Amy Klobuchar (D-MN) who took the torch from the late Sen. Paul Wellstone to help sponsor the two updates to the law, and House champions Rep. Doris Matsui (D-CA) and Rep. Steve Stivers (R-OH).

The Town Hall also will feature Acting Commissioner of the Food and Drug Administration (FDA) Dr. Janet Woodcock, and multiple current and former leaders of the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC). And, most importantly, it will include participation by several advocates whose engagement over the years helped achieve these results.

The event kicks off PPMD’s 2021 advocacy season, which will include the organization’s annual Advocacy Conference on March 10th with a virtual fly-in, as well as multiple additional planned online activities throughout the year, given the ongoing COVID-19 pandemic.  

“The Duchenne and Becker community has been tireless in its advocacy over the past two decades, helping achieve enactment of multiple laws and other policies that have helped drive meaningful progress, including four FDA-approved therapies for Duchenne and Becker. Twenty years later, the resolve and determination of this community is as strong as ever before despite the pandemic,” said Ryan Fischer, PPMD’s Chief Advocacy Officer.

PPMD continues to champion efforts to further increase funding for Duchenne and Becker research supported by the NIH and to expand public health surveillance and other programs within the CDC. PPMD also has been a longtime champion of policies to support patient-focused drug development, a topic very much on the radar as Congress prepares to reauthorize the next round of FDA user fees by next September.

“The Duchenne community has helped achieve much during the two decades from that first hearing. However, we are all aware of how much more remains to be done and of the far too many loved ones we have lost during this time. As we commemorate this milestone, we are focused on the future and on ending Duchenne once and for all,” Furlong said.

Media interested in the town hall or other activities to mark the 20th anniversary of the MD-CARE Act should contact Stephanie Ivanov: [email protected]

About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) fights every single battle necessary to end Duchenne.

We demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge treatments, and a community of support. We invest deeply in treatments for this generation of Duchenne patients and in research that will benefit future generations. Our advocacy efforts have secured hundreds of millions of dollars in funding and won four FDA approvals.

Everything we do?and everything we have done since our founding in 1994?helps those with Duchenne live longer, stronger lives. We will not rest until we end Duchenne for every single person affected by the disease. Join our fight against Duchenne at EndDuchenne.org. Follow PPMD on Facebook, Twitter, Instagram, and YouTube.

SOURCE Parent Project Muscular Dystrophy (PPMD)

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