- California Governor Newsom signs funding bill including $8.4 million over four years
to accelerate data collection effort toward a Parkinson’s cure
- In addition to funding hundreds of millions in scientific research in the state, the Foundation has provided gap funding and advocacy efforts for the California registry
WASHINGTON, D.C. AND NEW YORK, JULY 14, 2021 — The Michael J. Fox Foundation for Parkinson’s Research (MJFF) today commended California Governor Gavin Newsom for signing the state’s FY 2021-2022 budget that includes $8.4 million to fund the California Parkinson’s Disease Registry (CPDR) and to expand it to other neurodegenerative diseases over the next four years. The registry’s goal is to acquire, record and analyze epidemiological data of the incidence and prevalence of disease that can identify Parkinson’s “hot spots” throughout the state that will aid scientists in their work toward finding a cure.
“An estimated 116,900 people live with Parkinson’s in California — the highest number of people with the disease in the country. We need collaborative investments in Parkinson’s to move the dial on research and find a cure,” said Ted Thompson, JD, MJFF’s senior vice president of public policy. “Public policy initiatives like this registry can have a direct and lasting impact on how the research community does its work — data collection is absolutely critical so that researchers can view the full picture of a disease.”
Originally enacted in 2004, the CPDR collects health information on individual cases of Parkinson’s disease (PD) in California so that researchers can identify patterns and trends across a population diverse in race, ethnicity, socioeconomic status and history of exposure to occupational and environmental toxins. In 2017, the state legislature enacted new legislation and provided funding for the first time to build out a modern, electronic Parkinson’s patient registry. Through this year’s renewed funding, the CPDR will now expand its efforts to gather data that can inform research around PD and other neurological conditions. Data collected for the CPDR also will inform the national Parkinson’s data collection effort at the U.S. Centers for Disease Control and Prevention.
The $8.4-million expansion funding comes on the heels of a commitment of $400,000 in bridge funding from MJFF to keep the registry alive as the state navigated its budget during the COVID-19 pandemic. The Foundation also organized a neurological disease coalition to encourage expansion of the data collection effort to other neurodegenerative diseases. The Foundation’s financial support for the registry is coupled with its scientific investments in the state, now totaling more than $190 million in research programs issued to California institutions since 2000.
“Scientific discovery is moving faster than ever before, and we need all hands on deck when it comes to Parkinson’s research,” said MJFF public policy advocate Michael Sweet, 52, of Lakewood, California. “I live with Parkinson’s disease and know the power this registry will have in educating researchers and providing the data they need.”
About The Michael J. Fox Foundation for Parkinson’s Research
As the world’s largest nonprofit funder of Parkinson’s research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson’s disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson’s patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding $1 billion in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson’s research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson’s disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson’s awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world.
Finsbury Glover Hering