“People with Parkinson’s disease have every right to keep their diagnosis private until they are ready to share it publicly,” wrote Todd Sherer, PhD, CEO of The Michael J. Fox Foundation (MJFF) in an op-ed that ran in The Hill. “They also have a right to demand protections against environmental toxins that raise disease risk. Our foundation takes seriously our obligation to those living with Parkinson’s disease, and we expect nothing less of the federal government.” 

Todd and five other scientist leaders testified last week before the U.S. House Committee on Science, Space and Technology about a harmful rule the EPA is trying to enact. The proposed rule would limit the amount and types of science used in determining federal regulations, including policies and programs related to environmental restrictions in support of health. The rule also threatens to expose patient privacy, as it would require raw data on research to be made public, which in turn could expose confidential information on diagnoses. 

Following Todd’s testimony, he penned an op-ed for The Hill titled “EPA to make regulatory decisions using questionable science.” In it, he wrote about how the rule is harmful to people with Parkinson’s, as well as the field of scientific research. 

Media outlets have given this issue and the hearing itself a fair amount of coverage, including The New York Times, The Washington Post, Tampa Bay Times, National Law Review, Lexology, American Journal of Managed Care, and others. 

What’s next, and how can you help? Sign up to receive our action alerts and email updates so you can sign a future petition and let your voice be heard on Capitol Hill. We expect the rule will go through revisions in the coming weeks, and there will be a chance for organizations and individuals to weigh in with their comments and opinions. You can help us tell the EPA why this rule is harmful and will slow research toward a cure for Parkinson’s.