This past July, the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act became law. This is an ambitious federal mandate to intensify efforts and coordinate our nation’s best resources to prevent, treat, or cure, and to improve quality of care for the millions of people affected by Parkinson’s disease (PD) and all other neurodegenerative Parkinsonisms. Recently, the U.S. Department of Health and Human Services (HHS) asked the National Institutes of Health (NIH) to take the lead in implementing this Act, with support from the HHS Office of the Assistant Secretary for Health (see HHS statement and Federal Register Notice).
The Federal Advisory Council on Parkinson’s Research, Care, and Services will provide diverse perspectives.
In the National Plan to End Parkinson’s Act, the term “Parkinson’s” refers to PD and all other neurodegenerative Parkinsonisms, including multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Parkinson's-related dementia. The Federal Advisory Council on Parkinson’s Research, Care, and Services will provide advice on Parkinson’s-related issues, including recommendations for priority actions to be included in the National Plan. As required by the Act, the Council will include: two patient advocates, including one individual who is living with young-onset PD; a family caregiver; a healthcare provider; two biomedical researchers with Parkinson’s related expertise; a movement disorders specialist who treats persons with Parkinson’s; a dementia specialist who treats persons with Parkinson’s; and two representatives from Parkinson’s-related nonprofit organizations. Additionally, the Council will have representatives from thirteen Federal agencies that are involved in Parkinson’s clinical care, care services, or research. The Council will be co-chaired by the NINDS Director and the Associate Deputy Director for the Office of Science and Medicine for HHS’ Office of the Assistant Secretary for Health.
NIH is seeking nominations for individuals in all of these categories as we look forward to establishing this Advisory Council. Many of you know firsthand the devastating toll that Parkinson’s and related disorders can have on people diagnosed with these diseases, their caregivers, and their loved ones. There is tremendous value in incorporating the perspectives of such persons with lived experience with those of scientists, healthcare providers, and Federal partners to strengthen and advance meaningful research, treatments, and quality of care for all. We ask you to please nominate exceptional individuals for any or all of the roles listed above, and we also request that you please encourage others to consider nominating Council members as well. For more information, visit the National Plan to End Parkinson’s webpage.
Please use the nomination form to nominate yourself or someone else by February 14, 2025.
A National Plan to End Parkinson’s will help us narrow critical research gaps and improve care and services.
Parkinson’s disease is a chronic, progressive, degenerative neurological disorder marked by symptoms such as motor (tremors, muscle rigidity, slowness of movement) and non-motor (pain, anxiety, sleep problems, depression, etc.). According to the World Health Organization, there are over 8.5 million individuals with PD and the worldwide prevalence has doubled since 2000, making it the fastest-growing neurological disease. PD is the most common form of the Parkinsonisms, which are disorders that produce features and symptoms that closely resemble PD, including multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Lewy body dementia.
NINDS is the primary NIH institute for PD research and has long been committed to preventing and curing neurological disorders such as PD and other neurodegenerative Parkinsonisms. While recent advancements in PD research have been impressive, many research gaps remain in our understanding of the processes underlying PD and related conditions, and the development of therapies that target those processes to make it easier to live with them. Because aging is a key risk factor, as the population of older adults in the U.S. grows, the effects of such research gaps grow more relevant with each passing year. As the lead on the National Plan to End Parkinson’s, NIH will collaborate across Federal agencies and non-profit organizations to improve the care and services for those with PD and other neurodegenerative Parkinsonisms.
We owe this progress to the dedicated work of people with lived experiences.
Finally, it’s important to give credit where it is due. The official name of this new law—The Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson's Act—is a testament to the importance of prioritizing people with lived experiences and a reminder of two people whose journeys inspired others.
Dr. Emmanuel Bilirakis (the late brother of U.S. Representative Gus Bilirakis) was an internal medicine physician known for caring for his community who lived with Parkinson’s for many years. Despite the challenges of his condition, he remained a steadfast advocate for his patients and his community, embodying resilience and determination.
Before announcing early retirement due to her diagnosis of progressive supranuclear palsy, Representative Jennifer Wexton worked to gain support for the legislation. Her personal story was read on the House floor the day before the vote as she urged support of the bill so that “no family has to endure what ours has.”
For the most current updates on activities related to the National Plan to End Parkinson's, including upcoming events, research opportunities, and science advances, sign up for our listserv. Visit the National Plan to End Parkinson’s webpage for additional information.