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Washington, D.C., January 2025 – The United States is stepping up its efforts to combat Parkinson’s disease and other neurodegenerative disorders with the launch of the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act (P.L. 118-66), signed into law on July 2, 2024. This initiative, spearheaded by the U.S. Department of Health and Human Services (HHS) Office of the Assistant Secretary for Health (OASH) and led by the National Institutes of Health (NIH), aims to accelerate advancements in research, treatment, and care for Parkinson’s disease (PD) and related disorders.
The legislation focuses on a broad range of neurodegenerative conditions, including multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Parkinson’s-related dementia, in addition to PD itself. With the support of the NIH, the act directs the establishment of a Federal Advisory Council on Parkinson’s Research, Care, and Services. This council will provide guidance on the development and regular updating of a national plan designed to prevent, diagnose, treat, and cure Parkinson’s disease, while also working to alleviate symptoms and slow or halt its progression.
The goals of the national plan include improving early diagnosis, developing safe and effective treatments, enhancing coordination of care, and reducing the physical, mental, and social burden of Parkinson’s on individuals and their families. The initiative also emphasizes the importance of international cooperation to advance research and share best practices.
In anticipation of this significant initiative, the NIH has announced a call for nominations to fill positions on the Federal Advisory Council. The council will consist of a diverse range of members, including two patient advocates (one of whom will be living with young-onset PD), a family caregiver, a healthcare provider, biomedical researchers, movement disorders specialists, and dementia experts. Representatives from 13 federal agencies involved in Parkinson’s research and care will also participate.
The national plan is expected to be a vital step toward ensuring better quality of life for individuals affected by Parkinson’s and related diseases, as well as their caregivers. By fostering collaboration across federal agencies, research institutions, and nonprofit organizations, this comprehensive effort aims to address the growing needs of those living with Parkinson’s disease in the U.S.
The council will be co-chaired by the director of NIH’s National Institute of Neurological Disorders and Stroke and the associate deputy director for the Office of Science and Medicine at HHS’ OASH. The implementation of the national plan will be closely monitored to ensure the development of effective policies and strategies to meet the objectives of the Parkinson’s Act.
For more information on how to submit nominations to the Federal Advisory Council, please visit the NIH’s official website.
Source: NIH/National Institute of Neurological Disorders and Stroke
