3 Takeaways from the First National Parkinson’s Project Advisory Council Meeting

On June 29, the National Parkinson’s Project Advisory Council held its first meeting, a milestone that was years in the making and a turning point for the Parkinson’s community. 

The Council brings together Parkinson’s experts, government officials, care partners, advocates and people living with Parkinson's disease (PD) to develop the first-ever national plan to better diagnose, treat, prevent and ultimately cure Parkinson's. Michael S. Okun, MD, National Medical Advisor to the Parkinson's Foundation, was appointed to the Council, helping ensure the National Plan to End Parkinson's reflects both scientific expertise and lived experience.

This moment did not happen on its own. It is the result of years of advocacy by people like you. Advocates shared their experiences with Congress to push for the creation of this initiative in 2024. And less than a month after hundreds of advocates went to Capitol Hill this spring urging action on the National Parkinson's Project, the Council was finally seated.

Now the real work begins — and so does our responsibility to keep up the momentum. The Parkinson's Foundation is urging the Council to:

• Issue its first annual report within one year.
• Prioritize an estimate of the federal funding needed to address Parkinson's. 
• Make actionable recommendations to improve care for people living with PD across the lifespan.

What came out of this first meeting? Here are three takeaways:

1. The Council Acknowledged the Urgency to Act

From the outset, leadership from the National Institute of Neurological Disorders and Stroke set a tone of urgency, recognizing that the initiative's initial deadlines had been missed and emphasizing the need for actionable recommendations without further delay. 

Encouragingly, the Council indicated that a report would be delivered in summer 2027, which aligns with our ask that the Council produce its first report within one year. For a disease where there is no time to waste, that commitment to a timeline matters.

2. The Council Acknowledged More PD Resources Are Needed for Care and Research

To meaningfully address Parkinson's, we first need to understand the full costs of the disease — across research and care. The Parkinson's Foundation has been pushing for the Council to develop an estimate of the federal funding needed to prevent, diagnose, treat and ultimately cure Parkinson's, as well as the investment required to improve quality of life for those living with PD today. 

In this first meeting, the Council acknowledged the importance of creating an estimate as they continue their work. This is an important step: a clear picture of what it will take gives Congress the roadmap it needs to determine funding levels and spur meaningful investment.

3. The Parkinson’s Community Showed Up in Force

The energy and public engagement were unmistakable; more than 160 comments were submitted for this first meeting. Ken Chason,  People with Parkinson's Advisory Council Vice Chair and person living with PD, was one of 10 people recognized to present. 

“The Parkinson’s crisis is real and urgent,” Ken wrote in his testimony. “More than 1.1 million Americans have the disease, with approximately 90,000 new diagnoses each year. Parkinson’s is relentlessly progressive, devastating patients and families alike, and is on track to further strain our healthcare system. To fully understand the challenge and chart a way forward, it is essential to hear from people who live with Parkinson’s every day. As the Council begins its work, I urge it to keep the experiences of those living with Parkinson’s in mind.”

Ken drew on his own diagnosis journey to spotlight the community's top priorities: produce the overdue report within one year; identify the resources needed to prevent, diagnose, treat and ultimately cure Parkinson's; and prioritize recommendations to improve access to high-quality care. It was a powerful reminder of what the community can accomplish when it speaks with one voice.

Your Voice Can Shape What Comes Next

The first meeting is only the beginning. The decisions this Council makes over the coming months and years will shape Parkinson's research, care and quality of life for generations. 

The Parkinson's community making its voice heard is critical in making sure the Council  delivers results. You helped create the National Parkinson's Project. Now you can help see it through.

Ready to make a difference? Visit our Advocacy Center to join our Advocacy Network, contact your representatives and take action on the issues that matter most to the PD community today.