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August 2026

I'm making a liar out of myself this issue...if you've ever met me, I'm sure I've promised you that our monthly newsletter would be "brief", but I couldn't bear to cut down my colleague Kelly Brown's article this month. Maybe because I am just as attached to the Udall Center as she is -- we're all riding the same emotional roller coaster right now! I hope you agree that it's worth reading the whole thing.

Kelly Ryberg, MA, CCRP
Editor, Parkinson's Pulse

A Bittersweet Milestone: Fighting for our Udall Center of Excellence

In 2017, I made a big career change, moving away from bedside hospital nursing and into the world of clinical research at the University of Minnesota. The year before I started, the University had recently received a major and prestigious NIH P50 grant to fund a new center for five years—a vision spearheaded by our Department Chair, Dr. Jerrold Vitek. I was lucky enough to be hired as a research nurse under the leadership of one of the Center’s Principal Investigators, Dr. Scott Cooper. I didn’t quite know what to expect, but I was stepping into a brand-new, bustling hub: the University of Minnesota’s Udall Center of Excellence for Parkinson’s Disease Research.

I spent my early days learning everything I could—shadowing experienced clinicians, learning the ins and outs of research regulations, and even observing a deep brain stimulation (DBS) surgery (a common surgical treatment for Parkinson’s). Soon, we were enrolling patients into a variety of studies, all focused on the mission that NIH had funded: advancing our understanding of Parkinson’s and improving DBS therapy. One of these projects was a comprehensive, long-term study of people with DBS. Managing that registry quickly became the most rewarding part of my role. Because tracking Parkinson’s progression requires scrupulous data collection, I got to know these 53 participants deeply.

When you follow a group of people for nearly a decade, you don’t just collect data, you share in their lives. As nine years ticked by, I watched our participants become grandparents, travel the globe, move to new homes, run marathons, and ride the waves of triumphs and challenges that come with living with a chronic illness. While our participants were navigating their milestones, I was navigating my own major life chapters, too—from the joy of getting married and having a baby, to the deep personal grief of losing my own mother to early-onset Alzheimer’s.

The Udall Center grew, as well; we secured a second five-year grant, welcomed more members to the registry team—including another research nurse, Niecy; a research coordinator, Emily; and a research psychometrist, Alex—and enrolled nearly 100 remarkable patients into studies across the Udall Center. I always feel moved by the fact that these 100 patients chose to take on additional time, longer appointments, extra tests—not for their direct benefit (because these studies were not treatment studies), but to help researchers find the clues that can lead to breakthroughs in the future.
My fellow team members and I became more than just data collectors—we became an extension of our patients’ clinical care team. Together, we supported our patients in myriad ways: troubleshooting DBS settings, tracking down missing pharmacy orders, and connecting family members with vital resources, to name a few examples.

The "Spillover Effect" on All Patient Care

What we did not fully anticipate was how much studying this one group of patients would improve care for all of our Parkinson’s patients at the U, even those who aren’t in the study. Because research demands precision, we spent years developing rigorous tracking tools for medications, DBS programming, and health events. These are tools a busy clinical team simply wouldn’t have the time or resources to build from scratch during a fast-paced clinic day.
Beyond these tools, the study established a dedicated weekly case review where our research nurses and doctors, including neurologist Dr. Paul Tuite and neuropsychologist Dr. Erin Holker, walked through participants' cases in depth, checking on everything else going on, not just their Parkinson’s symptoms. (Because Parkinson’s doesn’t just happen in a vacuum.) Working hand-in-hand with clinicians like Tsega Orcutt, DNP, (who conducted so many of our study patient visits) and having this dedicated time to look at the 'whole patient' deepened our team's clinical expertise and sharpened how we manage complex PD cases across our broader clinic population.

The high standards of conducting research for the Udall Center of Excellence made us better clinicians, and that extra expertise has permanently elevated the day-to-day care for every single patient who walks through our clinic doors. This is the strength of an academic health center; our research improves our care.

A Tough Transition

The data we have collected over the years is exceptionally rare and valuable. We have meticulously tracked everything from movement scores and smell tests to genetic biomarkers, medication changes, and exact surgical coordinates of DBS electrodes. Very few studies in the world look at this much detail over this long of a timeframe. We are committed to continuing our work, but unsure what the future holds.

The Morris K. Udall Research Act was signed into federal law in 1997 to support Parkinson’s research, and for many years supported up to 10 Centers of Excellence. Unfortunately, there are no current opportunities for Udall Center renewal applications. While our team is actively exploring alternative funding mechanisms and potential future support from the NIH, our center (as well as 2 other remaining Udall centers across the country) is operating in a transition phase, as that second 5-year grant we were awarded ended last month.

Because we believe so deeply in the value of this research, our team is doing everything in our power to keep the work alive. The NIH has granted us a "no-cost extension," which means we are continuing the project for an extra year, using the small amount of funds we have left. To stretch our remaining resources, we have to stop tracking our longest-running participants so that we can focus our remaining funds on the work of enrolling new participants and following them through a shorter, defined timeline to solidify the data we already have.

Notifying our dedicated, long-term participants that we have to transition them out of the study purely due to the end of this grant is incredibly difficult. To everyone who has given their time, energy, and stories to this study: thank you. You have advanced the science of Parkinson's disease in ways that will be felt for generations. You have provided nearly a decade of granular, real-world data that captures the long-term reality of living with and treating Parkinson’s. You have built a multi-dimensional evidence base that our researchers here at the University of Minnesota will analyze and utilize to improve care for years to come.

Looking Forward

While this current Udall grant cycle will be ending, our commitment to the Parkinson’s community at the U of M is far from over. We are actively pursuing new grant opportunities to keep our vital work going, and our broader movement disorders team is as dedicated as ever to finding answers and improving your care. Importantly, our Center continues to recruit new participants across many research protocols (Udall and non-Udall funded), including intraoperative brain recordings and image-based DBS programming studies.

Federal research funding relies on the advocacy of people like you. If you want to see more robust funding for Parkinson’s research, please consider reaching out to your federal representatives to advocate for increased NIH support.

We’ve built something beautiful here at the U, and with your continued partnership, we aren't stopping now.

Kelly Brown, MPH, RN, CCRP
Research Nurse Coordinator
University of Minnesota, Movement Disorders Division
ksbrown@umn.edu

New therapies under investigation

You know we are super into research here at UMN! Here is a round-up of new drugs that are currently being tested at other institutions.

“Union busting” alpha-synuclein: Synthetic molecule SK-129 is designed to look and act like a protein. Why? So that it can interact with cellular proteins, such as the infamous alpha-synuclein, and prevent it from clumping together inside brain cells. SK-129 has been tested so far in cell culture, worm, and mouse models with good success, and it’s particularly exciting because it treats what is thought to be one of the causes of symptoms (alpha-synuclein aggregation) rather than the disease symptoms themselves.
“Sweeping away” clumped alpha-synuclein:
- mTOR is a cellular protein that controls autophagy, which you can think of as a “housekeeping” process for cells, recycling used or damaged cell parts. A new drug is being tested that is supposed to clear toxic alpha-synuclein protein clumps from brain cells by using the cells’ own processes that are regulated by mTOR. This approach is particularly novel because it is designed to target brain cells directly and avoid effects on the mTOR pathway in other types of cells in the body.
- Another way to target clumps of alpha-synuclein is via TMEM175 activation. TMEM175 is a protein on the lysosomes of cells. In the autophagy process, lysosomes are like the garbage disposal or your backyard compost bin. A drug being tested by Lysoway therapeutics helps TMEM175 work more effectively, which in turn can help improve the performance of lysosomes.
- Both of these drugs are being tested for the same goal (better alpha-synuclein clearance) while taking advantage of different cellular processes. Better recycling → less clumped up proteins cluttering up the brain cells, possibly slowing disease progression.

These drugs are all in the “pre-clinical” stage, where they are tested in cells in a lab and in animal models to see if they have potential for treatment. If studies show they can be useful, they may later be approved for initial testing in humans.

Advocacy Corner: Keep using your voices to shape federal resources for Parkinson’s!

The first meeting of the National Parkinson’s Project Advisory Council took place last month (take a peek back at our June issue for a reminder of what that is).

If you want to know what you missed, check out the slide deck, video recording, or meeting summary. They talked about current federal Parkinson’s programs and began devising a plan of action based on the goals and principles of the council. Over 150 comments were submitted for this first meeting (see below)!

The Council is now requesting more information “to identify the most important gaps and opportunities in research, care and services”
– submissions are due on August 22.

Summay of 162 public comments for the inaugural meeting of the Advisory Council on Parkinson's Research, Care, and Services. Public comments relating to six major topics of public concern related to Parkinson's and parkinsonisms. It is a recreation of slide 116 from the meeting in image format.

Free Parkinson's Events in August

1. Duluth PD Support Groups
Our own Dr. Sommer Amundsen-Huffmaster will speak at both groups this month!

General meeting:

🕒 Monday August 17 at 2-3:30pm CT
📌 Essentia Health Hermantown Clinic
4855 W Arrowhead Rd, Suite A
Hermantown, MN 55811
Contact Kitty Hoden (stevekittyhoden@gmail.com) for Zoom login info

Young Onset (YOPD) meeting:

🕒 Monday August 17 at 6-7:30pm CT
📌 YMCA at the Essentia Wellness Center
4289 Ugstad Road
Hermantown, MN 55811
Contact Sally Rollins (salster612@gmail.com or 952-898-9357) for Zoom login info

2. Moving with Confidence: Balance Strategies in Everyday Life
A physical therapist will share everyday strategies, helpful compensatory techniques, simple home adaptations, and adaptive equipment that can make common activities easier and safer in spite of issues with balance. A live Q&A will follow this nationwide presentation from the APDA.
🕒 Tuesday August 4, 12:00pm CT
📌 Online (Registration)

3. Coffee & Conversations: Psychosis & Hallucinations.
Hosted by the Parkinson’s Foundation, this virtual event invites you to bring a cup of your favorite beverage to this webinar where experts will share what these experiences mean, why they happen, how to recognize them, and how to respond with compassion. Bring your curiosity or maybe even questions about some of your own experiences.
🕒 Wednesday August 19, 12:00pm CT
📌 Online (Registration)

4. Can Parkinson’s Disease Be Inherited?
A webinar hosted by the MJF Foundation. Learn more about what we know about the genetics of Parkinson’s and how it can help guide research toward better treatments in the future.
🕒 Thursday August 20, 11:00am CT
📌 Online (Registration)