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Parkinson’s disease patients and scientists alike worry about their future

Ellen McCloskey jabs at a punching bag during a Rock Steady Boxing class.
Theo Welling
/
River City Journalism Fund
Ellen McCloskey jabs at a punching bag during a Rock Steady Boxing class. All the members in the class have Parkinson’s disease and hope the intense exercise will help stave off the worst symptoms.

Mary Eagan, 71, stares at the body-height punching bag, her delicate hands buried in a pair of giant red boxing gloves.

On this warm August morning, Eagan waits along with the rest of the Rock Steady Boxing class for instructor Brent Meyer to bark the next set of commands.

This story was commissioned by the River City Journalism Fund.

“Double hooks!” Meyer shouts. “Double hooks!”

Eagan leans in, then eagerly slams both fists into the bag, over and over.

The other class members enrolled in Rock Steady Boxing — four women and five men, all north of 60, all diagnosed with Parkinson’s disease — also punch away.

Meyer orders them to stop. Breathing hard, the class members drop their arms to their sides. “We’re gonna do our power move now,” Meyer says. “Knock it down!”

Eagan and her classmates commence punching. As they thump away, the bags topple over. “All the way down,” Meyer shouts. “Then we pick it back up, and knock it back down.”

The class, held in the basketball gymnasium at the Lodge in Des Peres, is winding down. Nearly 60 minutes of boxing and agility exercises has left the class members tired but exhilarated. In a world of uncertainty and frustration, there’s just something about letting it all out by smacking a punching bag with everything you’ve got.

Eagan pulls her right arm back and drives it straight into the bag. It hits the floor with a convincing thud. A look of triumph crosses her face. “That felt good,” she says later.

* * *

Parkinson’s disease is a progressive neurological disorder that affects movement. It occurs when the nerve cells in the brain that produce dopamine, a neurotransmitter, gradually degenerate. Its symptoms: frozen facial expressions, memory loss and confusion, tremors in the hands and legs, balance problems and difficulty walking. The disease affects about 1 million Americans and at least 10 million people around the globe.

Eagan was diagnosed with Parkinson’s in April 2023 after noticing she was shuffling her left foot. That led her to a physician who specializes in movement disorders.

“I asked him, ‘What can I do to help my body?’” she recalls. “He said, ‘Exercise, exercise, exercise.’”

 Mary Eagan gets ready to hit the punching bag during a Rock Steady Boxing class.
Theo Welling
/
River City Journalism Fund
Mary Eagan gets ready to hit the punching bag during a Rock Steady Boxing class.

Now, three times a week on average, she travels to the gym in Des Peres to box. Intense and unrelenting, Rock Steady Boxing focuses on developing participants’ coordination and balance.

“We work on everything that Parkinson’s takes away,” her instructor, Meyer, says. “While there is no cure, we try to make it as bearable as possible.”

Participating in Rock Steady takes grit. But what also enables Eagan and other class members to take part are medicines such as Rytary, which works to boost dopamine levels in the brain to help manage motor symptoms.

Rytary stands out among a growing list of medicines and treatments that have sparked optimism that one day a cure can be found for Parkinson’s.

Several of the most promising drugs, such as the inhaled levodopa drug Inbrija and the selective dopamine receptor agonist Tavapadon, which is still being tested, were developed with significant federal funding and under the auspices of the National Institutes of Health and the Parkinson’s Research Program — one of dozens congressionally directed medical research programs “aimed at advancing paradigm shifting research,” according to its mandate.

Until the second Trump administration began in January, NIH was a biomedical research behemoth, a crown jewel the rest of the world admired, producing breakthroughs patients grew to rely upon. With a budget, as of 2024, of $48.3 billion, the NIH accounted for 80% of the world’s investment in biomedical research.

About 84% of that amount was awarded to nongovernmental research institutions such as universities and medical schools, according to Unbreaking, a website chronicling changes to the federal government under President Trump. Such robust federal research funding has paid off for American consumers: Out of 356 new drugs approved in the United States between 2010 and 2019, 354 were made possible by government funding, according to Unbreaking.

Eagan knows the difference these drugs make. ”If it weren’t for these advancements they made in medications, in treatments, I’d be sitting at home,” she says.

Scientists now know more than ever about the causes of Parkinson’s — a combination of a person’s genetic predisposition and, in many cases, exposure to toxins in air pollution and popular herbicides used on farms and golf courses.

A study published in May in the Journal of the American Medical Association indicates that living within a mile of a golf course doubles a person’s chances of developing Parkinson’s, a correlation possibly explained by exposure to herbicides sprayed on the course that drain into drinking water. Other research has revealed the importance of healthy eating, moderate meat consumption and intense exercise.

“I feel so much better when I’m working out,” Eagan says. “I tell myself it’s almost as if I’m in a tug-of-war with my muscles. And the more I work them, the more I maintain my strength. That is very motivating.”

* * *

Hopes for new medicines and even a possible cure for Parkinson’s disease have come crashing down in the 10 months since Trump’s return to the White House.

The Trump administration has cut or frozen thousands of research grants to universities, hospitals and laboratories across America. For fiscal 2026, the Trump White House proposes a NIH budget of $27 billion — a 40% cut from the year before.

Those actions undermine the foundations of America’s prosperity and global leadership, says Ed Weisbart, spokesman for the Missouri chapter of Physicians for a National Health Program.

Scientific innovation and discovery “made the United States a country that everybody around the world has looked up to in one way or another,” says Weisbart, a retired family physician. “And for some reason President Trump and his cronies are determined to destroy the things that have actually made America great for generations.”

Overall, the NIH under Trump has cut or frozen 5,464 previously awarded grants worth $2.3 billion since January, with 2,860 grants reinstated, according to Grant Witness, a nonprofit tracking the termination of grants to scientific research agencies under Trump.

The administration has attacked major research centers such as Harvard University and UCLA. The White House withheld $2 billion in federal research grants from Harvard on claims the university tolerates antisemitism. A federal judge in September ruled that the antisemitism claim was a “smokescreen” for “an ideologically motivated assault” and that the research freeze is illegal.

Ellen McCloskey and others stretch during a Rock Steady Boxing class.
Theo Welling
/
River City Journalism Fund
Ellen McCloskey and other participants stretch during a Rock Steady Boxing class.

Despite facing no claims of antisemitism being allowed on campus, Washington University has been hit hard as well. A total of 44 NIH grants were terminated or canceled, with a total of $11.7 million of remaining, unspent funds, according to university spokeswoman Julie Flory.

“Most of the terminated grants only had a year or two left and the previous years of funding had been awarded and spent,” Flory wrote in an email. Nevertheless, the university announced in early October it is cutting 316 staff positions and eliminating another 198 vacant positions.

“We’re dismantling the science that is the foundation for everything,” Weisbart says.

Eagan’s independence depends on Rytary. But though the drug is effective now, she might have to switch to another medicine to treat her symptoms as it loses its efficacy.

”I know Rytary is going to work for me for a time,” she says. “But [what happens] when it stops working in some way or other, and I call my doctor and say, ‘Now what?’”

Ellen McCloskey, who’s also part of the Rock Steady class, says classmates don’t talk much about the funding cuts. “It is what it is,” she says. “We wish he hadn’t been elected. But we live with it.”

Frank Greco, 74, was diagnosed with Parkinson’s several years ago. As a way of coping, he’s enrolled in several studies examining the effectiveness of certain medicines for the disease at BJC Hospital, conducted under the auspices of the Washington University School of Medicine.

But now, because of cuts to NIH funding, “I’m not sure they will continue studying it,” he says. “That’s my concern.”

* * *

The Center for Advanced Medicine, in the heart of the Washington University medical campus near Forest Park, is where much of the university’s NIH-funded research takes place.

CAM, as it’s called by employees, is a 14-story glass and concrete building overlooking Forest Park Parkway. On a typical weekday, it hums with physicians, nurses, visitors and patients, many in wheelchairs.

Dr. Joel Perlmutter sees patients on the sixth floor. Perlmutter is a professor of neurology at Washington University School of Medicine and a prominent specialist in Parkinson’s disease and other movement disorders. In 2020, Perlmutter received a $2.3 million grant from the National Institute of Neurological Disorders and Stroke to investigate brain changes underlying Parkinson’s and in 2024 a $3.9 million grant to study brain inflammation in Parkinson’s patients.

But since the Trump administration returned to power, Perlmutter has been frustrated by repeated delays in grant reviews, funding and management.

Part of that stems from the change in NIH policy to emphasize recruiting underrepresented populations for studies to now trying to expunge all such efforts. Perlmutter believes such recruitment is “really important scientifically and for clinical benefit and application.” Even so, he says: “I had to expunge any comment about that. Because if that was there, it could be automatically tagged by government AI, which goes back and finds these and brings that back up for potential budget cuts or elimination. That’s crazy.”

Rock Steady instructor Brent Meyer ends class with an affirmation.
Theo Welling
/
River City Journalism Fund
Rock Steady instructor Brent Meyer ends class with an affirmation.

On top of that, staff cuts at NIH have left the agency overworked and slow to process grants, Perlmutter says. “That means we get delayed in being able to do our research. And it’s a real problem here at the university.”

In fiscal 2023, the NIH funded about $253 million in Parkinson’s research, making it the largest public funder of biomedical research globally. Now the Trump administration has put a much lower cap on indirect costs, and includes, in the proposed 2026 federal budget, a 40% cut to the NIH, to $27 billion. What’s more, the Department of Defense saw its biomedical research funding slashed by 57%, erasing research dollars for Parkinson's and other neurological conditions.

In June, MassLive published a profile of Harvard University neuroscientist Bence Ölveczky, who emigrated to the U.S. from Hungary at age 28. Ölveczky, a leading Parkinson’s researcher, said he came to America because of its reputation for leadership in science, based on robust government funding and the tight relationship between government and research institutions.

In May, the federal government revoked most of Harvard’s research grants, dealing a direct hit to Ölveczky’s lab. “It’s made America great,” Ölveczky said of America’s scientific infrastructure. “And now we are sort of willingly giving up on that. That’s the tragic part of this.”

The cuts are having their deepest impacts on the next generation of young scientists. The funding reductions make it difficult for young scientists to find jobs to pay off student loans and perform the research vital to launching their careers in science.

Laurie H. Sanders, an associate professor in neurology and pathology at the Duke University School of Medicine, is a nationally recognized Parkinson’s disease researcher. Her lab has developed a method that can detect Parkinson’s in its early stages with a simple blood test.

Sanders called the proposed cuts in NIH funding, especially as they would affect Parkinson’s research, “devastating,” according to the med school newsletter.

But Sanders added that her biggest concern is “not for myself. It's for my trainees. It's for the next generation of scientists. Looking into the face of this, how do we continue the momentum we’ve built? How do we continue our training? How do we encourage them?”

Perlmutter, the Washington University neurologist, ruefully agrees. “We’re about to lose a generation of scientists,” he says.

* * *

Ellen McCloskey performs an agility exercise during a Rock Steady Boxing class.
Theo Welling
/
River City Journalism Fund
Ellen McCloskey performs an agility exercise during a Rock Steady Boxing class.

Erin Foster has not given up hope — despite the alarms that her fellow scientists are sounding.

“I think there is a big concern that these cuts are going to have long-term negative effects and just set us back in the progress that we’ve made, especially as it pertains to more fair, and diverse and inclusive practices,” says Foster, a Parkinson’s disease investigator at Washington University’s School of Medicine. She believes the field can recover from the cuts.

“Not as much has happened that could happen, I guess,” she says. “So I guess it depends how far it goes. It could take a long time. It’s most definitely a setback.”

Perlmutter, the Washington University neurologist, feels less optimistic, especially since Aug. 7, when Trump signed an executive order that gives political appointees power over billions of dollars in grants awarded by federal agencies.

Scientists contend the change will threaten “to undermine the process that has helped make the U.S. the world leader in research and development” because it allows political appointees to review federal grants so that they are “consistent with agency priorities and the national interest,” the AP reported.

Trump’s executive order is “pretty straightforward. Scientists are vilified if they disagree with the agenda of the current administration,” Perlmutter says. “The only truth is what the administration says is true.”

Mike Fitzgerald is a freelance journalist who can be reached at msfitzgerald2006@gmail.com. This story was commissioned by the River City Journalism Fund, which seeks to advance local journalism in St. Louis. See rcjf.org for more info.

Mike Fitzgerald is a freelance journalist based in St. Louis.