CHARLESTON, W.Va. – Last week, the Senate passed the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act. The bill, which passed the House of Representatives in December 2023, was introduced by U.S. Senators Shelley Moore Capito (R-W.Va.) and Chris Murphy (D-Conn.) along with U.S. Representatives Gus Bilirakis (R-Fla.) and Paul Tonko (D-N.Y.). The Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act, which now awaits the president’s signature, is the first-ever legislation solely devoted to ending Parkinson’s disease.
The legislation was renamed in the House of Representatives to recognize Representative Bilirakis’ brother, Dr. Emmanuel Bilirakis, who passed away in May 2023 after a long battle with the disease, and a Congressional colleague, Representative Jennifer Wexton, who is courageously battling the rare neurodegenerative disease Progressive Supranuclear Palsy (PSP) and who helped with the bill’s passage.
The legislation aims to unite the federal government in a mission to cure and prevent Parkinson’s, alleviate financial and health burdens on American families, and reduce government spending over time. Parkinson’s disease is the second most common – and fastest-growing – neurological disease globally with nearly 90,000 new cases diagnosed every year.
“I have talked with, seen, and heard so many stories of West Virginians impacted by Parkinson’s disease,” Senator Capito said. “Whether they are living with the disease or caring for someone impacted by it, Parkinson’s takes a terrible toll on the physical, mental, emotional, and economic well-being of everyone involved. The Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act is commonsense legislation that will establish a robust response to address the disease and move us towards new treatments and a cure, and I’m thrilled to see it pass the Senate and on its way to becoming law.”
“All across Connecticut, I meet families that are suffocated by a family members’ Parkinson's diagnosis. Anyone living with or caring for a person with Parkinson’s knows it can be an absolutely devastating disease. As the number of people diagnosed with Parkinson’s is expected to rise to more than one million in the next few years, we need real collaboration across the public and private sectors to fast-track promising research, develop better treatments, support patients and their loved ones, and find a cure. I’m proud to have helped get this legislation across the finish line so we can finally establish a national plan to end Parkinson’s once and for all,” Senator Murphy said.
“On behalf of the 1 million Americans living with Parkinson’s disease, The Michael J. Fox Foundation applauds the passage of The National Plan to End Parkinson’s Act in the Senate,” Ted Thompson, senior vice president of public policy for The Michael J. Fox Foundation for Parkinson’s Research, said. “We extend our heartfelt gratitude to Senator Capito, as well as to Senator Murphy, Representative Bilirakis and Representative Tonko, for their exceptional bipartisan leadership on this bill. To the thousands of Parkinson's advocates across the country who helped make this historic step toward a future free from this disease a reality — thank you. The Michael J. Fox Foundation looks forward to seeing this bill signed into law, and to continuing our work with federal policymakers to bring it to fruition.”
“Senator Capito is an incredible leader and champion of better cures and treatments for neurological diseases,” George Manahan, a Charleston business owner and person living with Parkinson’s disease, said. “Her leadership on the National Plan to End Parkinson’s Act gives people suffering from Parkinson’s disease new hope for a cure. When I was diagnosed, I began working with state and federal lawmakers to prioritize the need for a cure and public-private collaboration to make it happen. Senator Capito is a hero to those of us living with Parkinson’s, and I am thankful for her work to pass this important bill.”
“Parkinson’s disease impacts many families causing disability in movement, cognition, and behaviors with no cure. Now more than ever, we need critical partnerships amongst scientists, physicians, government, industry, and foundations to accelerate research to improve function, quality of life, and to seek a cure,” Dr. Ali Rezai, Executive Chair of WVU Rockefeller Neuroscience Institute (RNI), said.
BACKGROUND:
The Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act will create an advisory council comprising members of federal agencies that supports research, care, and services for Parkinson’s, plus caregivers, patients, and other non-federal experts.
Specifically, the council will:
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