Tag Archives: National Plan to End Parkinson’s Act

The atypicals go to Washington

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Well, this week started in an interesting and I hope productive way.  CurePSP arranged for some of its Board members, including myself, to meet with staff of two U.S. Senators and six members of the House on October 27, 2025.  The goals were not to support any pending legislation, but to:

  • Raise awareness in Congress about PSP, MSA and CBD (the three leading “atypical Parkinsonian disorders”),
  • Emphasize the importance of maintaining and expanding Federal involvement in research and care for PSP, MSA and CBD.   
  • Encourage support for the upcoming recommendations of the advisory council established under 2004’s National Plan to End Parkinson’s Act (NPEPA).  That act created a group from multiple stakeholders to coordinate and advise the Federal Government on Parkinson’s research.  Thanks in part to CurePSP’s lobbying efforts, the NPEPA covers not only PD, but also PSP, MSA and CBD.

We split into two teams of six, each of which met with a legislative aide for one Senator and three Representatives.  Each 30-minute meeting included one neurologist (the other being Dr. Alex Pantelyat, a CurePSP Board Member from Johns Hopkins University), three or four other CurePSP Board members, and one person from Faegre Drinker, a prominent law/lobbying firm that is helping CurePSP pro bono.  The overall organizer was Jessica Shurer, CurePSP’s Director of Clinical Affairs and Advocacy.

My team’s four meetings were with staff of Sen. Andy Kim (NJ), Rep. Neal Dunn (FL), Rep. Darin LaHood (IL), and Rep. Troy Balderson (OH).  The other team met with staff of Sen. Eric Schmitt (IN), Rep. Doris Matsui (CA), Rep. Morgan Griffith (VA), and Rep. Diana DeGette (CO).  Of the eight, in case you’re interested, three are Democrats and five are Republicans. 

Each 30-minute meeting included:

  • A quick introduction to the three diseases and how they differ from Parkinson’s,
  • Some personal anecdotes of the difficulties navigated by the patients and their caregivers,
  • Some description of where the research stands right now, and
  • Our hopes and recommendations regarding the role of Congress in the fight.

All the staffers were well-trained, energetic, respectful, gracious, and eager to help.  They asked pertinent questions, took notes, and tried to focus on what’s feasible for their boss to do, either behind the scenes or through formal channels.  No one raised any political issues.

A powerful point of ours came from former Representative Jennifer Wexton of Virginia and NPEPA co-sponsor, who retired last year because of advancing disability from PSP.  She was unable to be part of our meetings but asked Jennifer Shurer to relay the following message to her former colleagues on Capitol Hill: “If PSP happened to me, it could happen to you or anyone.”

Was this all just political theater?  Maybe to an extent, but that’s how truly meaningful things get started – by grabbing the attention of those in power and educating them on our concerns, even via a junior staffer for a half hour.  We at CurePSP are grateful for the chance to get that ball rolling. 

The Feds pitch in

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I’m happy to report that the National Plan to End Parkinson’s Act was signed into law by President Biden this week. It covers not only Parkinson’s disease itself, but also “all other neurodegenerative Parkinsonisms, including multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Parkinson’s-related dementia.”

The bill is named after two people: Dr. Emmanuel Bilirakis, who died with PD last year and was the brother of the act’s original sponsor, Rep. Gus Bilirakis, Republican of Florida; and Rep. Jennifer Wexton, Democrat of Virginia, who announced in September 2023 that she has PSP. Both representatives have been critical proponents of the act throughout the legislative process. Here’s the President signing the act on July 2, 2024, seated between Rep. Wexton and Rep. Bilirakis.

Here’s a copy of the act. It requires the Department of Health and Human Services to develop and periodically update a coordinated Federal plan to find the causes and cures of the Parkinsonisms and to make recommendation for future Federal support of those efforts. The act requires the DHHS to appoint an Advisory Council of at least 23 members from multiple stakeholders to meet at least quarterly. It also requires the DHHS to organize an annual research conference on its efforts in this area. Both conferences are to be open to the public. Although the act itself provides no funding — not even for the conferences it requires — the Advisory Council and DHHS are tasked with generating recommendations for future Federal funding.

I’m not sure that this is a step forward for PD, where there’s already excellent public awareness, plenty of research conferences, and robust, ongoing programs in the academic, lay-led non-profit, philanthropic, and pharmaceutical sectors. I don’t know that “coordination” by a Federal agency is going to improve on the current system, which is driven by the inherently powerful, albeit messy, force of our capitalist system and by the collective voices of the 1 million Americans with PD.

But for PSP and the other atypical Parkinsonisms, it’s a different story. With only about 5,000 to 10,000 diagnosed affected people in the US and no major celebrity as its champion, PSP could benefit greatly from the awareness this act could bring. That could help turn the attention of all of those existing PD-interested players toward the atypicals.

And another thing: For years — no, decades — I’ve felt frustration over how promising preliminary findings in PSP often can’t gain traction because of personalities, scientific “fashion,” funding issues or other immediate practicalities. A potentially longer-term view of the Advisory Council could help change that, but only if the group avoids the traditional pressures hampering progress for the atypical Parkinsonisms up to this point. The potential, however, is definitely there.