Assemblywoman Amy Paulin
Bill will benefit the 65,000+ NYers currently living with Parkinson’s Disease
Assemblywoman Amy Paulin announces the passage of her legislation to establish a state Parkinson’s Disease Registry (A.5803/S.4674) which would provide for the collection of data on the incidence and prevalence of Parkinson’s disease (PD). The registry will help expand understanding of PD and advance research towards prevention, treatment and an eventual cure.
A registry of people with Parkinson’s will help researchers identify high-risk groups, detect prevalence patterns among the New York population, and uncover disparities in treatment in marginalized communities. Currently, ten other states, including California, already have such a registry.
“There are many researchers, doctors and advocates who are working to win the battle against Parkinson’s Disease,” said Assembly Member and Health Committee Chair Amy Paulin. “I’m proud to have authored the Parkinson’s Disease Registry bill to help in their fight against this disease, and am thrilled that it has now been signed into law. The more data we can give to researchers, the better they can direct their efforts to find a cure and more advanced therapies. I thank State Senator Hoylman-Sigal for his partnership on the bill, I thank The Michael J. Fox Foundation for their staunch advocacy, and I thank Governor Hochul for taking this important step forward in the fight against Parkinson’s Disease.”
State Senator Brad Hoylman-Sigal said, “Parkinson’s disease is the second most common and fastest-growing neurological disorder in the world. It currently impacts approximately 65,000 New Yorkers and those numbers are expected to increase. I’m thrilled that Governor Hochul signed our bill (S.4674A) with Assembly Member Paulin, which unanimously passed both legislative houses, to establish the New York State Parkinson’s Disease Registry. This new database will help facilitate the collection and utilization of Parkinson’s Disease data so public health officials can better measure the incidence and prevalence of the disease and use that information to provide vital contributions towards Parkinson’s research. I’m extremely grateful to the Michael J. Fox Foundation for Parkinson’s Research for helping us craft, and advocate for, this important legislation which will advance research and innovation to better prevent, diagnose, treat and ultimately cure Parkinson’s Disease.”
“The signing of New York’s Parkinson’s research registry bill into law is a monumental step forward for the Parkinson’s community,” said Julia Pitcher, director of state government relations at The Michael J. Fox Foundation for Parkinson’s Research. “After two years of dedicated advocacy, we are thrilled to see this moment come to fruition and applaud Assembly Member Paulin and State Senator Hoylman-Sigal for their leadership on the bill. We’re grateful to Governor Hochul for her commitment to improving the lives of more than 65,000 people living with Parkinson’s across this diverse state. The registry will provide critical data, offering researchers, clinicians and policymakers the insights they need to better understand the prevalence and progression of Parkinson’s disease and paving the way for advancements in treatment and care.”
Parkinson’s disease is a progressive neurological disorder that causes unintended and uncontrollable movements and affects the lives of nearly 1 million Americans. The U.S. spends $52 billion annually on Parkinson’s treatment, and in New York alone, the direct and indirect costs to care total $3.3 billion each year. Research shows that the prevalence of Parkinson’s disease has doubled over the past 25 years, yet much remains a mystery about this currently incurable disease.
“Creating a Parkinson’s registry in New York will help expand researchers’ understanding of the disease in order to ultimately improve the lives of those impacted,” said Paulin. “California, Maryland, Missouri, Nebraska, Nevada, Ohio, South Carolina, Utah, Washington, and West Virginia already have statewide Parkinson’s registries. I’m so pleased that New York will now also be able to contribute to the development of therapies, treatments and eventually a cure of Parkinson’s Disease.”
A.5803/S.4674 was sponsored in the New York State Senate by Senator Brad Hoylman-Sigal.
