“Act boldly ... No one in this community is going to hold you to account for acting too boldly or for swinging for the fences ... Act with urgency,” advised public commenter Allie Signorelli at the June 29, 2026, inaugural meeting of the Advisory Council on Parkinson’s Research, Care, and Services.
Our work began July 2, 2024, when the Dr. Emanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act was signed into law. The Act calls for the first-ever integrated national plan to prevent, diagnose, treat, and cure Parkinson’s disease and related disorders (PDRD). The Act also established this Council, composed of 10 public and 13 Federal members. Public members include patient advocates, a family caregiver, a movement disorder specialist, a dementia specialist, biomedical researchers, and leaders from Parkinson’s-related nonprofit organizations. On the federal side, the Council includes representatives from nine HHS agencies, the Department of Veterans Affairs, the Environmental Protection Agency, the National Science Foundation, and the Department of War. The full Council roster and member profiles can be viewed on the ACPRCS webpage. My long-time colleague Dr. Jordan Gladman, Acting Deputy Executive Officer at NINDS/NIH, serves as the Council’s Designated Federal Official. His past experience with NIH-supported neurodegenerative disorders research and National Alzheimer’s Project Act activities will guide this work.
The work of the Council is a national imperative. In opening remarks, Congressmen Gus Bilirakis and Paul Tonko, who helped bring the Plan to life, reminded us that more than six million people are living with Parkinson’s disease worldwide, with close to 90,000 new diagnoses every year. Notably, the Plan covers the broader family of related parkinsonisms. These include multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Lewy body dementias. These conditions share symptoms with Parkinson’s disease but often progress faster, are diagnosed later, or misdiagnosed entirely. As such, they are far less familiar to the public. This focus on PDRD will shape everything this council does, and it reflects our growing scientific understanding of these overlapping disorders.
The first portion of the day was simply getting oriented to where the federal government stands, with presentations from the federal Council members. For NIH’s part, I was proud to highlight our long history of supporting world-class Parkinson’s disease research, with an annual investment of $255 million dollars. While NINDS is the lead NIH Institute for PDRD, this investment remarkably spans most of the agency: 20 Institutes and Centers support PDRD research, infrastructure, and workforce training.
The good news is that we can already point to a dedicated, cross-government effort. This was reinforced by the incredibly informative presentations of my expert federal colleagues, many of whom talked about their own experiences with a loved one battling PDRD. Two things stood out to me: First, the Veterans Administration described how veterans are disproportionately affected by Parkinson’s disease because of service-related risk factors such as Agent Orange exposure, Camp Lejeune contaminants, and traumatic brain injury. Second: caregiving will be a major focus for this Council going forward. The Administration for Community Living shared a statistic that has stuck with me since: 40 percent of people living with Parkinson’s rely on unpaid, informal caregiving, and those caregivers give an average of 31 hours a week.
One thing that is clear is that there is no time to waste — at this meeting, the Council embraced an ambitious workplan. On our path to developing recommendations and priority actions for federal Parkinsons’ programs, the Council will partner with the National Academies of Science, Engineering, and Medicine to host two parallel public workshops in the Spring of 2027: one focused on research and regulatory programs, and one focused on care, services, and supports. Following the workshops, the Council will submit its first annual report with recommendations to Secretary of Health and Human Services (HHS) Robert F. Kennedy, Jr. HHS and its federal partners will then draw on those recommendations to develop a comprehensive National Plan by the end of 2027.
Public engagement has been extraordinary. We received 162 written comments ahead of this meeting alone. The day was appropriately capped off by several members of the public who offered poignant remarks, calling for urgent action, increased attention to young onset and atypical parkinsonisms, improved diagnosis, greater support for caregivers, and research funding at a level comparable to that for Alzheimer’s disease. Council members agreed that a genuinely patient-centered National Plan must include continuous, meaningful engagement with the community.
With that in mind, the administration wants to hear from you, whether you live with Parkinson’s or a related condition, care for someone who does, treat patients, conduct research, or represent an advocacy organization. The National Plan to End Parkinson’s Request for Information remains open through August 22, 2026. Additionally, we encourage and accept rolling public comments, which will be shared with the Council at every meeting. They will directly inform the Council’s work and the Plan itself.
I’m grateful to everyone who helped launch this important effort: our Congressional champions, the hundreds of people who offered their voices and experiences, our federal partners across NIH, HHS, and beyond, and all the people who offered their voices and experiences. I remain committed to moving with urgency, setting measurable goals, and delivering meaningful progress for the Parkinson’s community.
The Council will meet again on August 24 (event webpage), virtually, followed by meetings on November 9 (in person, with a virtual option) and December 7 (virtual). In the meantime, subcommittee co-chairs are being selected and will begin setting concrete goals for their first year of work.
You can watch the meeting recording and view all the meeting materials.
Amy Bany Adams, Ph.D.
Acting Director, National Institute of Neurological Disorders and Stroke