Public Comment for the Advisory Council on Parkinson’s Research, Care and Services
The inaugural meeting of the Advisory Council on Parkinson's Research, Care, and Services—created under the National Plan to End Parkinson's Act—will be held virtually on June 29, 2026 10a-4p EDT. The committee will be sworn in, and members will begin strategizing the federal framework for Parkinson's disease. The meeting is free, open to the public, virtual, and will be streamed on HHS Live: https://www.hhs.gov/live
The council is accepting public comments. Personal experience matters. Comments can include your connection to Parkinson’s, diagnosis, symptoms, treatments, environmental exposures, access to care, caregiving experience, veteran status, research participation, or the daily realities of living with the disease.
To submit a public comment, email NationalPDplan@nih.gov. Include “public comment” in the subject line and body of your message. Keep your submission to 1,000 words or fewer.
Public Comment from PD Avengers
On behalf of PD Avengers, thank you for the opportunity to provide public comment to the Advisory Council on Parkinson’s Research, Care, and Services.
PD Avengers is a global alliance of people with Parkinson’s, care partners, families, friends, clinicians, researchers, and advocates working together to end Parkinson’s disease. We add urgency to research, wellness, and advocacy by uniting people and organizations around the world to demand change in how Parkinson’s is seen, treated, prevented, and ultimately ended.
The National Parkinson’s Project is a historic opportunity. It exists because people affected by Parkinson’s raised their voices, shared their stories, and demanded national action. Now the challenge is to ensure the National Plan reflects the full reality of Parkinson’s.
Parkinson’s is not only a movement disorder. It is not only a disease of tremor. It affects sleep, mood, thinking, speech, balance, digestion, pain, fatigue, employment, relationships, independence, and family life. It affects care partners, children, veterans, rural communities, people exposed to toxic chemicals, and people who struggle to access specialists, medications, therapies, and reliable information.
Better care is essential, but it is not enough.
A serious National Plan must include prevention. The United States cannot treat its way out of Parkinson’s while continuing to ignore environmental risk factors linked to the disease. Paraquat, trichloroethylene, air pollution, contaminated water, and other toxic exposures must be part of the national conversation. The plan should include coordinated federal action to reduce exposure, improve environmental monitoring, fund research into toxic links, and protect workers, veterans, farmers, rural families, and communities at elevated risk.
The plan must also improve earlier diagnosis. Too many people spend years searching for answers while symptoms are dismissed, misdiagnosed, or treated in isolation. Earlier diagnosis requires better education for primary care providers, improved access to movement disorder specialists, stronger referral pathways, and investment in biomarkers and screening tools that can help detect Parkinson’s before irreversible damage has occurred.
The plan must improve care across the full course of disease. Every person with Parkinson’s should have access to multidisciplinary care, including movement disorder specialists, physical therapy, occupational therapy, speech therapy, mental health care, nutrition support, social work, palliative care, and exercise programs. These services should not be luxuries available only to people with the right insurance, income, geography, or ability to advocate for themselves.
The plan must also recognize care partners as essential. Care partners provide unpaid labor, emotional support, medication management, transportation, financial coordination, safety monitoring, and daily problem-solving. They are part of the Parkinson’s care system, whether or not the system acknowledges them. The National Plan should include care partner education, respite, mental health support, workplace protections, and financial recognition of the true cost of caregiving.
The plan must build better data systems. We need stronger national data on incidence, prevalence, environmental exposures, disease progression, access to care, treatment outcomes, disparities, and care partner burden. Without better data, the country cannot measure progress or identify who is being left behind.
The plan must make research more inclusive and more meaningful. People with Parkinson’s and care partners should be involved from the beginning in setting research priorities, designing studies, choosing outcomes, recruiting participants, interpreting results, and communicating findings. Research must include women, younger-onset patients, older adults, veterans, rural communities, Black, Latino, Indigenous, Asian, and other underrepresented populations. It must also include people living with advanced Parkinson’s and related neurodegenerative parkinsonisms.
The plan must speed the path for promising therapies while still demanding strong evidence. People living with Parkinson’s do not have decades to wait. We need urgency, coordination, smarter trials, better endpoints, faster recruitment, and clearer pathways for treatments that may slow, stop, or prevent disease progression. At the same time, people with Parkinson’s deserve honesty, transparency, and rigorous science.
Finally, the National Plan must include accountability. It should set clear goals, timelines, responsible agencies, funding needs, public reporting requirements, and measurable outcomes. The Parkinson’s community needs more than a report. We need a living national strategy that drives action.
PD Avengers urges the Advisory Council to ensure the National Plan includes:
Prevention and environmental risk reduction.
Earlier diagnosis and better access to specialists.
Comprehensive, multidisciplinary care for all people with Parkinson’s.
Meaningful support for care partners.
Better national data and surveillance.
More inclusive and patient-centered research.
Faster development of promising therapies with strong evidence.
Clear timelines, accountability, and public reporting.
This is a defining moment. The National Parkinson’s Project must meet the scale of the disease, the urgency of the science, and the lived reality of the people and families affected every day.
Thank you for your leadership and for listening to the Parkinson’s community.
Larry Gifford
President and Co-Founder
PD Avengers
larry@PDAvengers.com
