Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson's Act Becomes Law

For Congressman Bilirakis, this fight is extremely personal. Sadly, he has lost two immediate family members to this disease, both in the past year. His brother, Dr. Emmanuel Bilirakis, passed away in May of 2023 after a long battle with the disease. He was a wonderful human being and a primary care physician who gave so much back to his community. Congressman Bilirakis is grateful to his friend and Ranking Member of the Health Subcommittee, Anna Eshoo, for her suggestion to change the title of the bill in honor of Dr. Emmanuel Bilirakis. Congressman Bilirakis further amended the title of the bill to also honor his colleague, Jennifer Wexton, who is courageously battling the rare neurodegenerative disease Progressive Supranuclear Palsy (PSP) and whose help has been instrumental in garnering the support needed to pass this priority measure.At today's bill signing in the White House, Congressman Bilirakis was joined by his sister-in-law, Maria Bilirakis, his nieces, Stella and Evelyn Bilirakis, and Congresswoman Wexton.

"Today is a great day for Parkinson's patients and their families.I celebrate this important milestone in memory of my dear brother, other family members, and on behalf of all Americans who are still struggling with this debilitating disease," said Congressman Bilirakis."It takes a terrible toll on the physical, emotional and economic well-being of everyone involved. The lack of treatment options leave patients, families, and American taxpayers in a terrible quandary. We must change our approach to get better results, which is exactly what our legislation will do. It builds upon past successes and strives to replicate other national project models that have helped advance health care goals and treatment options. This critical legislation will provide hope to those who are suffering and hopefully lead to better patient outcomes with less expensive disease management. I thank my colleagues and the many patient advocates who helped us get the bill across the finish line!"

"In Congress, I have made helping those with neurological disorders one of my top priorities for more than a decade. I first learned about Parkinson's from a friend who suffered with it. So, when the opportunity arose to partner with Congressman Bilirakis on this meaningful effort I jumped right in and made it my personal mission to get this done on behalf of the millions of people living with Parkinson's. It is incumbent on Congress to ensure Americans know they will be supported during this frightening and life-altering time. Our legislation does just that. By moving this bill forward, we will make a positive difference, improve lives and even save lives. And for the millions of Americans living with Parkinson's, as well as their loved ones, I hope this brings much needed hope,said Congressman Tonko."

"On behalf of the 1 million people living with Parkinson's disease in the United States, The Michael J. Fox Foundation is proud to support the National Plan to End Parkinson's Act and offers deep gratitude to Representatives Bilirakis and Tonko for their leadership on this bill," said Ted Thompson, Senior Vice President of Policy for The Michael J. Fox Foundation for Parkinson's Research. "With groundbreaking progress made in Parkinson's research this year - including the discovery of a biomarker - there is no better time to focus our efforts on accelerating science and providing better care to every patient and family impacted by this disease."

The Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson's Act sets up an Advisory Council, comprised of experts from across the federal government in every related agency, combined with non-federal appointed members, represented by patient advocates, specialist providers, clinicians, and Parkinson's researchers. This new entity will focus efforts on an annual report to the Department of Health and Human Services and to Congress with an evaluation of the current efforts to prevent, treat and cure Parkinson's. It will also provide annual recommendations for ways to reduce the escalating burden of this disease on patients and families, improve health outcomes and quality of care for Medicare and Medicaid beneficiaries and Veterans, and better research the underlying causes of this disease. The National Parkinson's Project will also incorporate and study other Parkinson's-related neurodegenerative diseases, including PSP, multiple system atrophy, corticobasal degeneration, and Lewy Body Disease.