November 13, 2023:
Congressional support for The National Plan to End Parkinson’s Act continues to grow. The bill has now garnered 23 cosponsors in the U.S. Senate and 146 cosponsors in the House — remarkable bipartisan support for this very important legislation!
June 14, 2023:
Editor’s Note: This blog update is written by George Manahan, small business owner and policy advocate in West Virginia.
This afternoon, I had the honor of testifying before the U.S. House Energy and Commerce Committee Subcommittee on Health about the National Plan to End Parkinson’s Act. In my testimony, I spoke about what it’s like living with Parkinson’s disease and the impact it has on my family and my work. It was important for me to share what the National Plan bill really means for those of us living with Parkinson’s. It means hope. It means progress. It means that all federal agencies who have anything to do with Parkinson’s are going to be able to come together for the first time in a strategic way to ensure there is a laser focus on preventing and curing Parkinson’s.
The National Plan to End Parkinson’s Act is modeled after the successful National Alzheimer’s Plan which laid the groundwork for a quadrupling of federal research investment in Alzheimer’s. I’m energized by the promise of what can come from the National Plan to End Parkinson’s Act. And I’m heartened and encouraged by my time with various members of Congress at the hearing this afternoon. Not only did we have good dialogue during the Q&A part of the hearing, I also learned that quite a few members of the subcommittee have family members and friends living with Parkinson’s disease.
Advocacy is important to me because I want to use my voice in ways that uplift our whole community, and in ways that can prevent and cure this disease. I also want to make sure federal and state governments are doing everything they can to make sure that people living with Parkinson’s can get the care and support we need.
You can watch the hearing here. I give my personal testimony at the 45:36 mark. And, I answer questions from members of Congress throughout the Q&A session that follows.
May 8, 2023:
Advocates and members of the Parkinson’s continue to email, call, and meet with their members of Congress to ask them to support the National Plan to End Parkinson’s Act (S.1064/H.R.2365). And it’s working! The bill now has 11 cosponsors in the Senate and 48 cosponsors in the House.
Here’s what the community is saying about advocating for congressional support of the National Plan:
“I just got the news that Rep. Matsui has agreed to cosponsor the National Plan to End Parkinson's Act! I would like to thank you all for your efforts in making this happen. For me and an ever-increasing number of Californians afflicted by this disease, this legislation offers hope in a fight where losing hope is devastatingly easy. I am personally grateful for all of you, and the many others who have been working to push this forward. Because of you, hope is in my corner. Thank you, thank you, thank you.” — Jerry Pepper
You can reach out to your members of Congress to ask them to support this bill. It’s easy and it only takes about 60 seconds to do: Ask Congress to Help Prevent and Cure Parkinson’s Disease
Here is recent press coverage of the legislation:
- Murphy co-sponsors bill to prevent and cure Parkinson’s (Westchester & Fairfield County Business Journals)
- Wexton, Kiggan, Stabenow, and Scott Introduce Bipartisan Reoslution Designating April as Parkinson’s Awareness Month (U.S. Congress)
- Ulster County names April “Parkinson’s Awareness Month” (ABC News Channel 10; Albany, NY)
- Summit County Council holds meetings with U.S. Congress representatives (KPCW radio / NPR; Park City, UT)
- Ranking Member Capito Presses NIH Officials on Budget Request (Appropriations Subcommittee Hearing Video and Transcript; Washington, D.C.)
- Northwest group connecting people living with Parkinson’s disease (NBC News KING 5; Seattle)
- Coming Together on the Journey to End Parkinson’s (Abbott Blog Post)
On Wednesday, March 29, 2023, the U.S. House of Representatives and U.S. Senate reintroduced the first-ever legislation solely devoted to ending Parkinson’s disease. As you may recall, the bill was first introduced in the previous Congress, but did not come up for a vote by the time Congress adjourned at the end of its session in December 2022.
The National Plan to End Parkinson’s Act (H.R.2365 / S.1064) will unite the federal government and private enterprise in a mission to prevent and cure Parkinson’s. It also will alleviate financial and health burdens on American families and ensure those living with the disease have access to the care they need. About one million people are living with Parkinson’s in the United States and there are nearly 90,000 new cases diagnosed every year.
This bipartisan legislation is led by Senators Shelley Moore Capito (R-WV) and Chris Murphy (D-CT) and Representatives Gus Bilirakis (R-FL) and Paul Tonko (D-NY). The bill was introduced with the support of six additional senators and 12 additional representatives who signed on as cosponsors. The Michael J. Fox Foundation and Parkinson’s community are thankful for their leadership in re-introducing the bill in the new Congress. We also are grateful for the advocacy from many volunteers in the Parkinson’s community who met with their members of Congress to ask them to cosponsor the bill for its introduction.
It’s Time to Advocate
This bill will go through the traditional congressional process and will need to be voted on by the House and Senate. Your members of Congress need to hear from you! Please contact them and ask them to co-sponsor this historic legislation. We have a pre-written email you can use. It’s easy and takes about 90 seconds to do!
How does the National Plan actually work?
Parkinson’s is a disease that requires a national effort to cure and prevent. Parkinson’s costs the U.S. $52 billion every year, half of which is shouldered by the federal government. That annual cost is expected to grow to $80 billion by the year 2037. A National Plan 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.
The public-private advisory council created as part of this legislation will report to Congress on their progress and impact in ending Parkinson’s. This is the kind of forward-looking strategy and responsible accountability the Parkinson’s community needs and deserves.
We will update this blog as the legislation advances through Congress, so stay tuned! Please follow us on our social media channels to get the latest and greatest news about the National Plan as Congress begins its work. If you have a relationship with your members of Congress, please email us at email@example.com so we can work with you to ask your elected officials to cosponsor this legislation.
What Congress is saying about the National Plan to End Parkinson’s Act:
What the community is saying about the National Plan to End Parkinson’s Act:
Parkinson’s News Today: National Plan to End Parkinson’s Act Reintroduced