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Historic US Act aims to end Parkinson’s Disease

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The National Plan to End Parkinson’s Act which aims to eliminate Parkinson’s Disease was passed by the Senate, and will now go to Biden to be signed into law.

The Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act is the first federal legislation dedicated to ending Parkinson’s Disease.

Under the Act, passed on 23 May, a plan to “prevent and cure Parkinson’s, ameliorate its symptoms, and slow or stop its progression” will be regularly updated, and an Advisory Council on Parkinson’s Research, Care, and Services will be established which will provide an evaluation of all federally funded efforts in Parkinson’s research as well as recommendations for Parkinson’s prevention, cure and care.

The Council, which will include members of multiple federal agencies, as well as non-federal members such as researchers, patients and carers, will also provide coordination between organisations responsible for Parkinson’s research.

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Additionally, the Act aims to address the financial and health burdens associated with the disease for patients and families, and reduce government spending.

U.S. Senators Shelley Moore Capito (R-W.Va.) and Chris Murphy, as well as Representatives Gus Bilirakis and Paul Tonko, introduced the Act in December 2023.

Congressman Bilirakis stated: “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 for their support and I look forward to the President signing into law very soon.”

The Act follows the discovery of a biomarker for Parkinson’s in April 2023, when researchers developed a technique that identifies the build-up of abnormal protein deposits – known as α-synuclein – a hallmark of disease.

This discovery of this biomarker will help guide research and could help with early diagnosis, before symptoms have begun.

Speaking at the time of the Act’s passing, Michael J. Fox of the Michael J. Fox Foundation for Parkinson’s Research, activist, and former actor, stated: “When we started the Foundation, we could only dream of the breakthroughs the Parkinson’s community has experienced over the last year, from the discovery of a biomarker to the federal government advancing a plan to end Parkinson’s.

“Today, I’m endlessly thankful to everyone who has carried the load to get us here — advocates, scientists, patients, families, clinicians, caregivers and legislators, especially the bill’s lead sponsors Senators Shelley Moore Capito and Chris Murphy and Representatives Gus Bilirakis and Paul Tonko as well as Senate Majority Leader Chuck Schumer and Representative Jennifer Wexton.

“A National Plan to End Parkinson’s is a historic opportunity to accelerate our search for cures, and now is the time. The Foundation stands ready to partner with our national leaders to bring the Plan to life and make today’s generation of patients the last to live with Parkinson’s as we know it.”

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