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Federal advisory council on Parkinson's holds inaugural meeting to shape national plan
Summary
The inaugural advisory council convened to begin developing the congressionally mandated national plan to prevent, diagnose, treat and cure Parkinson's and related disorders. Agencies outlined existing programs, data gaps and a request for information open through Aug. 22 to inform the council's work.
Acting NINDS Director Amy Bonnie Adams opened the inaugural meeting of the Advisory Council on Parkinson's Research, Care, and Services, saying the council will advise HHS and federal agencies on a “national plan to end Parkinson’s” required by the law signed in July 2024.
“We are very anxious to move forward,” Adams said, acknowledging the council has not met the statute’s initial deadline to deliver a national plan to Congress in January 2026 and describing a work plan to produce a high-quality plan quickly. She thanked council members, federal staff and the public; the council reported it had received more than 160 written public comments for consideration.
Jordan Gladman, the council’s designated federal official at NINDS, summarized the council’s statutory duties under the Federal Advisory Committee Act: hold quarterly meetings during the first two years, produce an annual federal inventory of Parkinson’s-related programs, convene an annual research meeting, and submit annual recommendations to the HHS secretary and Congress. Gladman said the council will include 10 public members and 13 federal members and described conflict-of-interest safeguards and public-engagement practices.
Rep. Paul Tonko, who identified himself in prerecorded remarks, briefed members on the scope of the problem and the law that created the council. Tonko said the United States has “nearly 1,000,000 people living with Parkinson’s” and cited roughly 90,000 new U.S. diagnoses annually in his remarks, framing the council’s role as coordinating federal research and care efforts.
The meeting agenda combined two sessions: morning agency briefings on research-focused programs and afternoon presentations on care and services. Federal agencies including CDC, EPA, DOD’s research programs, FDA, NIH and NSF gave short presentations describing current activities, data resources and near-term priorities. Speakers stressed gaps — notably in national surveillance, environmental exposure data, biomarker maturity for population surveillance, and workforce capacity — that the council will need to address in recommending investment priorities.
Next steps noted at the meeting included agency follow-up on specific technical questions raised during Q&A, NINDS-led development of tracking categories for Parkinsonism funding, and a public request for information to be considered in drafting the national plan; the RFI deadline given in the meeting materials is Aug. 22.
The council recessed for lunch and planned to reconvene for the afternoon session and further discussion of a draft work plan.
