WASHINGTON, March 8, 2022 /PRNewswire/ — On Tuesday, March 8, 2022, advocates led by Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), will once again be meeting with scores of lawmakers to urge them to support programs important to the Duchenne and Becker community.
For the second year running, PPMD’s 2022 Advocacy Conference will be virtual, but no less impactful and important. More than 260 advocates will be joining the organization to participate in this year’s event, meeting with nearly 240 House and Senate offices to help inform Members of Congress about the critical need to continue investing federal resources in Duchenne-specific priorities and programs and to garner support on the BENEFIT Act.
This year’s Advocacy Conference comes shortly after PPMD marked the 20th anniversary of the enactment of the Muscular Dystrophy Community Assistance, Research, and Education (MD-CARE) Act in December, the law that ushered in two decades of increased resources and commitments to Duchenne research, public health, and therapy development efforts. PPMD’s Advocacy Conference is the longest running advocacy event in rare disease in the United States, with over two decades of advocacy in Washington, D.C.
“As we once again prepare to engage with Congress, the need for strong and sustained advocacy is no less than it was two decades ago,” said PPMD Founding President & CEO Pat Furlong.
“While we are grateful for the progress that has occurred over the past 20 years, largely driven by the laws and policies PPMD advocates have helped drive, we know much more needs to be done. Our 2022 agenda is focused on ensuring federal programs keep pace with the needs in the field to lead to advancements in care, treatment, and overall life for families living with Duchenne,” she added.
This year’s Advocacy Conference includes a request to continue funding the Centers for Disease Control and Prevention’s (CDC) Muscular Dystrophy program, which has focused on surveillance to better understand the prevalence of Duchenne, Becker, and other forms of muscular dystrophy, at $8 million and to fund the Department of Defense’s Duchenne research program at $12 million.
The request will also seek to evaluate the impact care considerations and PPMD’s Certified Duchenne Care Centers have had on improving health outcomes and to identify remaining gaps and needs. And it will urge support for medical research looking at the mental health challenges of patients and families impacted by Duchenne and to address challenges and opportunities in gene therapy for Duchenne.
In addition to these provisions, advocates will also be asking lawmakers to enact into law the bipartisan BENEFIT Act, S. 373 led by Senators Wicker and Klobuchar, and H.R. 4472 led by Representatives Matsui and Wenstrup, which will strengthen policies at the FDA focused on ensuring that the perspective of the patient and caregiver is considered as part of any review of candidate therapies.
PPMD has been a leader in the field of patient engagement over the past decade and believes the BENEFIT Act will further strengthen the field for Duchenne, Becker, and other communities.
“The Duchenne community has been tireless in its advocacy for over two decades, helping achieve enactment of multiple laws and other policies that have helped drive meaningful progress, including five FDA-approved therapies for Duchenne,” said Ryan Fischer, PPMD’s Chief Advocacy Officer
“As we head into our virtual fly-in, I thank our advocates for all you have done to get us to this point and all that you will do through your continued passionate advocacy. And I thank our many champions and supporters in Congress for moving us closer to our goal of ending Duchenne,” Fischer said.
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 five 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.
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SOURCE Parent Project Muscular Dystrophy (PPMD)