A Turning Point for Parkinson’s: Why the June 29 Advisory Council Meeting Matters
On June 29, 2026, the newly established Advisory Council on Parkinson’s Research, Care, and Services will hold its inaugural meeting, a major step in implementing the National Plan to End Parkinson’s Act. As the first formal gathering of the federal body charged with shaping the nation’s strategy to prevent, diagnose, treat, and ultimately cure Parkinson’s disease (PD) and related disorders, it also gives the Parkinson’s community an early opportunity to share its perspective with a nationally appointed panel.
For the Parkinson’s community, this meeting shows that years of advocacy are translating into action. The Advisory Council brings together people living with Parkinson’s, care partners, clinicians, researchers, nonprofit leaders, and federal representatives to advise the National Institutes of Health (NIH) on Parkinson’s-related research, care, and services.
Your voice matters. APDA encourages the Parkinson’s community to log into the virtual meeting and submit comments. You can use APDA’s draft template, but you are strongly encouraged to personalize it with your own PD story and/or why this is important to you, or you can write your own from scratch. Please note, public comments must be submitted by June 22 at 5 p.m. ET to nationalPDplan@nih.gov.
Key Deliverables to Watch
Although the June meeting is only the beginning, the Council’s work will produce several deliverables that could shape Parkinson’s policy and funding for years. Here are some things to keep an eye on as the Council’s work progresses:
1. Development of the National Parkinson’s Plan
The Council’s primary responsibility is to help create and maintain a national plan for Parkinson’s disease and related neurodegenerative Parkinsonisms, setting priorities for research, care delivery, workforce development, caregiver support, and public awareness.
2. Recommendations to Improve Research and Care
The Council will recommend actions to NIH that could expand research investment, improve access to specialized care, reduce disparities, strengthen caregiver support, and improve care coordination.
3. Assessment of Federal Investments and Gaps
The National Parkinson’s Plan creates an opportunity to assess current federal efforts and identify unmet needs, including research investment, workforce shortages, caregiving challenges, and long-term care.
4. Regular Reports to Congress and the Public
Ongoing reports are required and will create accountability by tracking progress, identifying barriers, and recommending actions for federal agencies and Congress.
5. Improved Coordination Across Federal Agencies
Because Parkinson’s affects multiple federal agencies, the Advisory Council can improve coordination, reduce silos, and strengthen the impact of federal efforts.
Background: From Legislation to Implementation
The National Plan to End Parkinson’s Act created the first coordinated federal effort focused on Parkinson’s disease. It directs the Department of Health & Human Services (HHS) to develop and maintain a national strategy covering research, clinical care, support services, and prevention, with the Advisory Council helping guide and evaluate that work.
The June 29 meeting is expected to include the swearing-in of Council members, presentations on existing federal Parkinson’s programs, and discussion of the Council’s initial work plan and priorities.
APDA’s Commitment
APDA applauded the seating of the Advisory Council earlier this year and welcomed the appointment of three APDA-affiliated leaders to the Council: Cathi Ann Thomas, RN, MS, CNRN; David G. Standaert, MD, PhD; and Sara Whittingham, MD. Their expertise will help ensure that the voices of people living with Parkinson’s and their families are represented as this work moves forward.
The June 29 meeting is a starting point. Success will be measured by whether the National Parkinson’s Plan leads to meaningful improvements in research funding, access to quality care, caregiver support, public awareness, and outcomes for the more than one million Americans living with Parkinson’s disease.
As the Advisory Council begins its work, APDA will continue advocating for strong federal investments and policies that improve the lives of everyone affected by Parkinson’s. The community worked hard to secure passage of the Act; now the focus turns to making its promise real.
To learn more about APDA’s advocacy efforts and to sign up for Advocacy Action Alerts so you don’t miss opportunities to get involved, please visit www.apdaparkinson.org/advocacy