Special thanks to the PD Avengers!
Talking Points
PD Advocate Allie Signorelli has put together talking points for tomorrow to make it easier on you.
A Call for Progress on the National Parkinson’s Project
On WEDNESDAY, DECEMBER 10, 2025
#whereisthePDplan
Background: The National Plan to End Parkinson’s Act became law on July 2, 2024, after
receiving overwhelmingly bi-partisan support in Congress (passing 407-9 in the House of
Representatives on December 14, 2023, and unanimously in the Senate on May 23, 2024). The
Parkinson’s community was vital in helping it to pass, making thousands of points of contact to
our elected officials urging them to support the bill.
The law calls for an integrated national plan to prevent, diagnose, treat, and cure Parkinson’s
and slow or stop progression. The Plan will be developed with input from an Advisory Council
on Parkinson’s Research, Care, and Services, which will include people living with Parkinson’s,
caregivers, health care providers, researchers, advocacy organizations, and representatives
from federal agencies.
The Issue: Since the bill was signed into law, the following updates have been shared with the
public.
• In January 2025, Walter J. Koroshetz, MD, Director of NIH’s National Institute of
Neurological Disorders and Stroke, and David Goldstein, MS, Associate Deputy Director
for the Office of Science and Medicine for were named as the Co-Chairs of the Advisory
Council Note: Mr. Goldstein was subsequently let go during the DOGE process and the
co-chair position has not been announced as re-filled.
• A call for applications for members of the Advisory Council opened in mid-January and
closed on February 14, 2025. There has been no public announcement of members of
the Council to date.
• NO OTHER UPDATES HAVE BEEN PROVIDED
The Call to Action: It is time to make our voices heard again and demand progress be made
on the plan. On Wednesday December 10th we are asking everyone in the Parkinson’s
community to join us in a call to action to make meaningful progress on the plan. Here’s how
you can join in this important grassroots effort:
• Contact (email, call or post on social media) your Representatives and Senators and ask
them for an update on the National Parkinson’s Project – a law that they overwhelmingly
supported. Members of Congress can be found HERE
• Post on social media using the hashtag #whereisthePDplan
• Tell your story and that of this community online or to local media if you have
connections
Suggested talking points you might want to use:
• Each year more than 90,000 Americans are diagnosed with Parkinson’s which means in
the two years since the House of Representatives first passed the bill, 180,000 more
citizens have been told they have Parkinson’s.
• A similar plan was created for Alzheimer’s in 2012 called NAPA. In the 18 months after
NAPA was signed into law, an Advisory Council was seated, meetings were held, a plan
was formed and presented to Congress, and funding for the plan was approved in the
next budget.
• Urge Congress to direct HHS to
o We ask Congress to urge HHS and the White House to take the critical step of
seating the NPP Advisory Council immediately and no later than the end of 2025.
o Set an aggressive meeting schedule in 2026 for the Council to develop the plan
o We urge Congress to pass the FY26 Senate Labor-HHS bill, which includes $5M
to launch the NPP and support its mission.
• Please be sure to keep your posts personal to your story and your connection to
Parkinson’s.
We urge everyone to remain positive and refrain from partisan or negative
communications which will not be helpful in securing progress.
DON’T FORGET TO USE THE HASHTAG #whereisthePDplan
Accounts to tag when you post:
– Your members of Congress: most have social media accounts to be sure to tag them
when you post
– NIH https://www.nih.gov/news-events/nih-social-media
– HHS https://www.hhs.gov/web/social-media/index.html
– The White House https://www.whitehouse.gov/
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