The National Plan establishes a federal advisory council
dedicated to finding a cure for Parkinson's disease.
NEW
YORK, May 23, 2024 /PRNewswire/ -- The
Michael J. Fox Foundation for Parkinson's Research (MJFF)
today celebrates the passage of The National Plan to End
Parkinson's Act (H.R.2365/S.1064) in the U.S. Senate. This is the
first-ever federal legislation dedicated to ending Parkinson's. The
bill passed in the U.S. House of Representatives last
December. With passage in both the House and the Senate, the
bill will be sent to President Biden's desk to be signed into
law.
Majority Leader Chuck Schumer
(D-NY) announced passage of the legislation this afternoon from
the floor of the Senate (video below). With bipartisan
support and 215 total cosponsors in Congress, Senators
Shelley Moore Capito (R-WV) and
Chris Murphy (D-CT) served as
the lead sponsors of the bill in the U.S. Senate with
Representatives Gus Bilirakis
(R-FL) and Paul Tonko (D-NY) at
the helm in the U.S. House of Representatives.
"When we started the Foundation, we could only dream of the
breakthroughs the Parkinson's community has experienced over the
last year, from the discovery of a biomarker to the federal
government advancing a plan to end Parkinson's," says
Michael J. Fox. "Today, I'm
endlessly thankful to everyone who has carried the load to get us
here — advocates, scientists, patients, families, clinicians,
caregivers and legislators, especially the bill's lead sponsors
Senators Shelley Moore Capito and
Chris Murphy and Representatives
Gus Bilirakis and Paul Tonko as well as Senate Majority Leader
Chuck Schumer and Representative
Jennifer Wexton. A National Plan
to End Parkinson's is a historic opportunity to accelerate our
search for cures, and now is the time. The Foundation stands ready
to partner with our national leaders to bring the Plan to life and
make today's generation of patients the last to live with
Parkinson's as we know it."
This legislation will unite public and private sector experts
through a federal advisory council to create and implement a
national plan to better diagnose, prevent, treat and ultimately
cure Parkinson's disease. The council — made up of members of
federal agencies, people living with Parkinson's, care partners,
researchers, clinicians and other experts — will regularly report
on its progress to Congress and the U.S. Secretary of Health and
Human Services.
A cross-country strategy to end Parkinson's has the potential
to:
- Dramatically increase federal research funding;
- Develop more effective pathways for treatments and cures;
- Improve early diagnosis;
- Spark new and improved models for patient care;
- Create standards and measures to prevent Parkinson's
disease;
- Address health disparities in diagnosis, treatment and clinical
trial participation and
- Enhance public awareness of the disease.
"Today, the Parkinson's community has made history," said
Ted Thompson, MJFF's senior
vice president of public policy. "As we celebrate this moment, The
Michael J. Fox Foundation expresses our gratitude to every
grassroots advocate, partner organization and member of Congress
who helped advance this bill. Signing this bill into law will
ensure much-needed collaboration between the public and private
sectors in the name of better treatments, earlier diagnosis and
greater access to quality care. For every American living with
Parkinson's or an atypical parkinsonism, their families and
caregivers, we look forward to continuing our work with
policymakers to bring the National Plan to fruition."
The legislation is modeled after the successful National
Alzheimer's Project Act (NAPA), signed into law in 2011. NAPA has
paved the way for improved therapies and greater access to quality
care for patients, and the federal government now invests
$3.8 billion in Alzheimer's and
dementia research annually, a seven-fold increase since NAPA became
law.
Parkinson's is the second most common and fastest-growing
neurological disease in the world. An estimated more than 1 million
Americans live with Parkinson's today, including over 110,000 U.S.
military veterans. It costs the U.S. $52
billion per year to care for people living with Parkinson's
in direct and indirect costs. The federal government covers about
half of that cost while the rest falls to people with Parkinson's,
their families and caregivers.
In April 2023, MJFF announced the
discovery and validation of a Parkinson's biomarker through the
Parkinson's Progression Markers Initiative, its landmark clinical
study with sites around the globe. This critical research
breakthrough promises a future where every person living with
Parkinson's can expect improved care and treatments — and newly
diagnosed individuals may never advance to full-blown symptoms.
About The Michael J. Fox Foundation for Parkinson's
Research
As the world's largest nonprofit funder of Parkinson's research,
The Michael J. Fox Foundation is dedicated to accelerating a cure
for Parkinson's disease and improved therapies for those living
with the condition today. The Foundation pursues its goals through
an aggressively funded, highly targeted research program coupled
with active global engagement of scientists, Parkinson's patients,
business leaders, clinical trial participants, donors and
volunteers. In addition to funding $2
billion in research to date, the Foundation has
fundamentally altered the trajectory of progress toward a cure.
Operating at the hub of worldwide Parkinson's research, the
Foundation forges groundbreaking collaborations with industry
leaders, academic scientists and government research funders;
creates a robust open-access data set and biosample library to
speed scientific breakthroughs and treatment with its landmark
clinical study, PPMI; increases the flow of participants into
Parkinson's disease clinical trials with its online tool, Fox Trial
Finder; promotes Parkinson's awareness through high-profile
advocacy, events and outreach; and coordinates the grassroots
involvement of thousands of Team Fox members around the world. For
more information, visit us at www.michaeljfox.org, Facebook,
Twitter, LinkedIn.
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SOURCE The Michael J. Fox Foundation for Parkinson's
Research