Elections, Consequences, and Parkinson’s

I don’t care who you voted for in the last Presidential election. Whether you supported Harris, Trump, Jill Stein, Cornel West, or Pat Paulsen, you made a decision based on criteria that made sense to you, and you’re welcome in my community.

Having said that, I’ll also say this: if you or a loved one has Parkinson’s… or Alzheimer’s…or diabetes…or cancer… and the candidate you supported won the 2024 Presidential election, decisions he’s made are likely to have a direct, negative impact on your lives.

The new administration has attempted to reduce National Institutes of Health “indirect cost” funding to 15% of each total grant — far below what is currently allowed. Indirect costs are things like supplies, equipment, building and lab maintenance, and support staff. The policy is currently tied up in court.

On January 22, the administration froze grant-review meetings at NIH. That freeze has been partially lifted, but Infections Disease Advisor reports that research funding in the first six weeks of the year dropped from $2.5 billion in 2024 to $1.4 billion in 2025.

On March 7, the administration canceled $400 million in federal grants to Columbia University for reasons unrelated to the other cuts. The New York Times reports that $250 million of this comes through NIH for medical research. Columbia is negotiating to get that funding back, but in the meantime, according to the Times, it has put dozens of studies on hold.

There is a lot of uncertainty as these things work their way through the system, but if the cuts stand, they have the potential to set back the effort to cure Parkinson’s by years.

Duke University, home of a nationally-renowned Movement Disorders Center, has begun to cut back:

Already, the uncertainty is causing reverberations at Duke’s School of Medicine, which receives over three-quarters of the university’s NIH funding. Expansion projects are being shelved. Fewer Ph.D. students are being admitted. And researchers are assessing whether their projects can continue.

Dr. Jack Lipton, Associate Dean of Research Analytics at Michigan State University’s Medical School, summarized the potential impact to a local West Michigan TV station:

Michigan State University’s Grand Rapids-based research center houses 33 research teams. Areas of emphasis include Alzheimer’s disease, Parkinson’s disease, and women’s health.

Dr. Lipton tells me losing NIH funding would stop their work. “If we have this kind of cut to the work that we do, we’re just not going to be able to do it anymore,” Dr. Lipton said…

…Dr. Lipton says Michigan State University would likely lose about 27 million dollars. “There’s two pieces that fund research. There’s the project based research that we do, which includes the funding for Parkinson’s disease or Alzheimer’s disease, and then there’s additional funds that we receive that are related to the cost of running the laboratories in which we work,” Dr. Lipton said.

In big picture terms, a lot of Parkinson’s research is likely to be slowed or stopped in the next few years. The Michael J. Fox Foundation has a good summary of the various factors in play.

And these issues have already affected individual people. The New York Times is working on a story about that — here’s a screenshot from their mobile app from March 20:

While the Times works on their story, I’ve got one to share.

Kimberly Jacobsen is a mom, wife and attorney, diagnosed with Parkinson’s at the age of 51. She’s enrolled in a 3-year clinical study and… I’ll let her tell the story.

Multiply Kimberly Jacobsen’s experience by hundreds, or possibly thousands, of studies for Parkinson’s, cancer, dementia, diabetes, cancer, and other diseases, and you’ll see where this is heading.

I’m 65 years old, ain’t getting any younger, and am not in a position to wait extra years for a cure because someone took a wrecking ball to the funding.

So…What Can We Do?

There are two other branches of government that can have an impact on this. The lawyers are going to have to handle the courts — we need to focus on the legislative branch.

The loudest voices have the best chance of getting a response. If you, like this reporter, have a rooting interest in getting the research funding restored, now is the time to contact your Congressperson or Senator.

Bonus points if your Congressperson or Senator is a Republican, since they (in theory anyway) have the President’s ear, and control both houses of Congress.

Here’s a website to get their contact information: https://www.usa.gov/elected-officials . Fill in your home address and it’ll give you their address and phone number.

A phone call, especially if you can get a live human being on the phone, is likely to have a stronger impact than an email. So is a letter, typed on paper, put in an envelope with a stamp, and mailed to their office — someone has to open the envelope and read it before it goes in a file.

That’s the best we can do until the midterms roll around.

Bonus for Those Who Read to the Bottom

This is my blog, and I think duets with goats are funny. So here’s “Somebody That I Used to Know.”

“The Devil Went Down to Georgia” performed by voice, guitar, and washing machine.

.

Ruthie Foster overpowers Black Sabbath’s “War Pigs.”

9 responses to “Elections, Consequences, and Parkinson’s”

  1. catjollyfbfca93c2d Avatar
    catjollyfbfca93c2d

    Sad and trying days we are living in. I’ve had to slow down on news, because it just makes me so angry.

    Like

    1. shakinstreet.com Avatar

      I suspect that your approach is probably the best way to handle all of this. I’ve been doing the opposite – wallowing in it. I’m not sure that is sustainable for four years, but we will see.

      Like

      1. catjollyfbfca93c2d Avatar
        catjollyfbfca93c2d

        I was turning CNN in the morning, listening to and from work, while exercising. I found myself swearing and getting more and more agitated. I was angry at work. I needed to back off. Now, I just scroll through headline pop ups.

        Like

  2. Dave Avatar
    Dave

    Good stuff — thanks, Phil. I’d like to add another action to the list: If your congressperson or senator is holding a “town hall” meeting in your area, go and be vocal. These meetings are getting a healthy amount of media coverage.

    Like

    1. shakinstreet.com Avatar

      Good point, Dave. Town halls are a great way to make the kind of noise we need to make, and it sounds like they are getting noticed.

      Like

  3. collectionleftebb509fd81 Avatar
    collectionleftebb509fd81

    nicely framed call to action🙏 Rob

    Like

    1. shakinstreet.com Avatar

      I felt it needed a CTA to pass the “so what” test. But as Dave pointed out, I should’ve also mentioned town halls.

      Like

  4. mentalitycheerfullya4b3f4e660 Avatar
    mentalitycheerfullya4b3f4e660

    THanks for posting this message…so important!!

    LIke you, I am very concerned. As someone who has spent her entire career in academia and healthcare, I have seen firsthand the lifesaving advancements that federal funds have made possible…..including in some of my own work. Cuts in research funding certainly threaten this progress. And as one now living with PD, my level of concern has only heightened. The hope I recently felt regarding better treatments and even a cure, is threatened.

    But I also believe, as a voting citizen, we can act and possibly make a difference. Contacting our elected officials and voiding our concern is a start. I have done this and have encouraged all my family and friends to do the same. I have heard back from my congressman and once senator. I will continue to make contact. I think there is also benefit from raising public awareness and mobilizing those in one’s community. I recently participated in a local “Stand Up for Science Rally” here in Pittsburgh. It was well-attended.

    There is power in numbers. Perhaps they will listen…….

    Like

    1. shakinstreet.com Avatar

      I certainly hope they start listening — today’s HHS layoffs tell me they haven’t gotten the message yet.

      I heard RFK Jr. say “We’re going to do more with less” the other day. All available evidence indicates they’re doing less with less.

      Like

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I’m Phil Bernstein

I was diagnosed with Parkinson’s Disease on May 25, 2023. At the time, I was only vaguely aware of Parkinson’s — primarily from articles in People about Michael J. Fox. And I didn’t know anyone with the disease.

Now, I know a lot more about the illness, and I’ve joined the Parkinson’s community in my hometown of Portland, Oregon.

I’ve found that writing helps me think through challenges, and this illness definitely qualifies as a challenge. I’ve started Shakin’ Street to help me think through the various obstacles, tools, and resources that a newly-diagnosed Parkinson’s patient encounters along the way.

I hope some of these posts help you address and tackle your own challenges.

Let’s connect