What Happened?

If you or someone you love has Parkinson’s disease, the Parkinson’s Foundation is now lobbying on what your medicine costs and whether there will be enough doctors to treat you. It reported $240,000 in lobbying costs for July through September, four times the $60,000 it reported for April through June, according to its third-quarter federal lobbying report and a Legis1 review of the foundation’s disclosures. ​

The foundation reported $260,000 for January through March, the quarter it registered to lobby, for $560,000 so far this year. Federal rules require rounding these figures to the nearest $10,000. The foundation does its own lobbying. Its lone named lobbyist, Erin O’Quinn, once worked for Rep. Kim Schrier (D-WA), according to Legis1.

Why Does it Matter to Me?

The summer report added three topics the foundation hadn’t listed before:

  • Prescription drugs: clinical trials, plus what Parkinson’s medications cost and how easy they are to find.
  • Medical research: funding for research and clinical trials, including the Clinical Trial Modernization Act.
  • Immigration: a proposed Homeland Security Department fee on H-1B work visas, which the foundation ties to doctor shortages.

The group also kept pressing for more money for Parkinson’s programs, including research centers at the Department of Veterans Affairs. Advocates have won that fight before: the federal spending law signed Feb. 3 restored $16 million for the Defense Department’s Parkinson’s research program after a 2025 cut, another patient group, the American Parkinson Disease Association reported.

Both Sides, Now

The foundation also wants a ban on paraquat, a weed killer used on U.S. farms that its filing calls a Parkinson’s risk factor. It backs a House bill that would ban the chemical outright and a ban in next year’s environment spending bill. The Michael J. Fox Foundation has pushed for a national ban for more than a decade and notes that more than 70 countries have banned paraquat.

The Environmental Protection Agency (EPA), which decides which pesticides can be sold, sees it differently. On its paraquat page, the agency says it “has not found a clear link” between paraquat used as directed and Parkinson’s. Environmental toxicologist Susan Goldhaber, writing for the American Council on Science and Health, argued in June that the science is unsettled and that state bans such as Vermont’s are mostly symbolic.

What Happens Next?

The EPA said in November 2025 that it will ask paraquat makers for more data on whether the chemical can drift through the air before making a final decision, and it has not posted a date. The agency has also delayed some limits on trichloroethylene, an industrial solvent the foundation also flags, until a federal appeals court finishes reviewing the rule.

The HEALTHY BRAINS Act from Rep. Gus Bilirakis (R-FL) and Rep. Suhas Subramanyam (D-VA) would create federal research centers to study whether exposures like these raise the risk of brain diseases. It has sat in the House Energy and Commerce Committee since March 3, and the foundation’s next lobbying report is due Wednesday, Jan. 20, 2027.

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