2023 RUSH Parkinson’s Disease Donor Impact Report
Advancing Care, Improving Lives Your Impact on the RUSH Parkinson’s Disease and Movement Disorders Program
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Your Support Improves People’s Lives
You are helping RUSH advance research, treatments and overall quality of care, making a direct difference in people’s lives. On the following pages, we are proud to highlight achievements and progress made possible in the RUSH Parkinson’s Disease and Movement Disorders Program over the past year because of your support. Our experienced team of clinicians, researchers, nurses and support staff are focused on making day-to-day life better for their patients and patients’ loved ones. Simultaneously, our team of investigators is seeking answers to pressing questions about Parkinson’s disease onset and progression to improve treatments and identify ways to prevent — or even cure — the disease. Much of our exciting progress is gaining national and even international recognition, and it is rooted in support from individuals who recognize the potential of our ideas and provide resources to test our hypotheses. Each faculty member brings unique expertise to our program, but all of their work is ultimately centered on creating new knowledge that enhances care and improves people’s quality of life. Your partnership is making a tangible difference in the lives of people with Parkinson’s disease and other movement disorders and their care partners. Our work is so much more effective with your support. Thank you. Sincerely,
Deborah A. Hall, MD, PhD Director, RUSH Parkinson’s Disease and Movement Disorders Program, The Parkinson’s Foundation Chair of Neurological Sciences
Christopher G. Goetz, MD Director, Strategic Growth and Innovation
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By the Numbers
8,277
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Patients treated in fiscal year 2023
Research articles published by faculty in 2022
150
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Active research projects in the Parkinson’s Disease and Movement Disorders Program
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Fellows in fiscal year 2023
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Presentations by RUSH faculty and trainees at the 2023 International Congress of Parkinson’s Disease and Movement Disorders
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Visiting scholars (from France and Sudan)
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Team members
A Partner to Care Partners: Promoting the Best Quality of Life for Individuals With Advanced Disease and the People Who Love Them Jori Fleisher, MD, MSCE, FAAN, receives federal grant to advance research launched by philanthropy to improve life for patients and their care partners
Through successes and struggles, everyone needs a strong support system to rely on.
also experience a better quality of life. For years, Dr. Fleisher and her team have piloted a novel model of care involving interdisciplinary home visits for people with advanced Parkinson’s disease and peer mentoring for caregivers.
For people diagnosed with Parkinson’s disease and those who serve as their care partners, support is essential but often hard to find. The experiences of the disease — particularly nonmotor symptoms such as cognitive changes, difficulty sleeping, depression, anxiety, apathy, hallucinations, pain and weight loss — can surface feelings of isolation and overwhelm.
In August 2023, Dr. Fleisher’s efforts were rewarded with a prestigious Research Project Grant, or R01, from the National Institutes of Health for her project “PERSEVERE in Lewy Body Dementia: A Randomized, Controlled Trial of Peer Mentor Support and Education” to study the impact of caregiver peer mentorship on a larger scale over the next five years.
In the words of Jori Fleisher, MD, MSCE, FAAN, associate professor in the Department of Neurological Sciences and one of the field’s most passionate advocates for people with Parkinson’s disease and their caregivers: The calvary isn’t coming.
“It’s beyond humbling and still a little hard to believe,” Dr. Fleisher said. “Going into medicine, I always thought that I would be a clinician or maybe a clinician educator. I never thought that I was a researcher. To be able to do projects that, to me, feel directly related to giving back and having a tangible benefit to patients and families — and to have that funded by the NIH at a level that’s comparable with basic science research — is such a validation of this work. It centers caring for people and putting their needs front and center.”
But this is exactly the challenge Dr. Fleisher has devoted her career to solving. Driven by personal experiences with family members affected by neurologic diseases and the individual experiences of the patients she treats, Dr. Fleisher seeks to implement, improve and widely distribute programs that improve the lives of people with Parkinson’s disease, other movement disorders and their care partners. She strives to equitably expand access to quality care for those who are homebound or in later stages of the disease and ensure patients’ individual goals and wishes are achieved.
Advancing the caregiver peer mentoring model The PERSEVERE study builds on Dr. Fleisher’s previous donor-funded work to help people living with advanced Parkinson’s disease, people with Lewy body dementia, or LBD, and their caregivers manage the significant burdens they face. The national study will evaluate the efficacy of an
Integral to Dr. Fleisher’s approach is the idea that when caregivers are cared for, people with Parkinson’s disease
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Jori Fleisher, MD, MSCE, FAAN, left, discusses patient care with members of her interdisciplinary team Grace Hong, RN, MSN, middle, and Sarah Chen, LCSW, APHSW-C.
educational intervention delivered to current caregivers by trained and experienced caregiver peer mentors. Researchers will examine if and how the program improves the well-being of caregivers and their loved ones.
Following mentors’ recruitment and training, Dr. Fleisher and her team will recruit more than 500 current caregivers of people with LBD. These caregivers will be randomly split between a control group and an active group. The control group will receive a light educational intervention consisting of weekly emails on topics related to disease progression and caregiving. The active group will receive this information in addition to a trained peer mentor who will coach them through a curriculum covering LBD knowledge and social support topics.
The study also places a much-needed focus on LBD — a form of dementia caused by abnormal deposits of the protein alpha-synuclein in the brain that disrupt the production of dopamine, which can cause parkinsonism. LBD affects at least 1.4 million people in the U.S., and Parkinson’s disease dementia is a form of LBD. Most people with LBD are cared for by loved ones experiencing strain and lacking the knowledge, resources and support to identify and manage the disease’s challenges.
Outcome data from the study will inform further adaptation and distribution of this model. “With the way our health care system is set up, family caregivers don’t have a safety net,” Dr. Fleisher said. “It often takes so much effort for someone to finally say, ‘I need help. I am trying to do all of this care 24/7, and I can’t do it myself,’ but our health care system doesn’t pay for that.
In the study’s first year, Dr. Fleisher will partner with the Lewy Body Dementia Association, the Parkinson’s Foundation and the Davis Phinney Foundation to recruit and train 120 experienced family caregivers who will serve as mentors in the study.
“We’re hoping to come up with a low-cost safety net for our family caregivers and for them to know that all of that lived experience and wisdom is valuable to others. It’s not just that it was valuable when they were going through it. It has value for everyone coming after them until we have better treatments and a cure.”
“You could know everything you need to know about the symptoms your loved one might have, but it may do little good if you are neglecting your own self-care, if you’re not acknowledging the guilt, anger or changes in roles and relationships that come with those symptoms,” Dr. Fleisher said. “The better the caregiver does, the better the person with the disease does. We’re doing a disservice to our caregivers that ultimately harms them and their loved ones if we don’t acknowledge that.”
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on patients, much less caregivers,” Pensyl said. Pensyl cared for her late husband, Ira Bell, and Manak for his late wife, Ro. Both Pensyl and Manak got involved with Dr. Fleisher’s work because of her inclusivity of people with advanced Parkinson’s disease and her willingness to provide palliative care — both somewhat rare to find in the field. Both Pensyl and Manak participated in Dr. Fleisher’s previous caregiver peer mentorship pilots and continue to serve as mentors and advocates today. “They are so committed to making life better for people with Parkinson’s disease and Lewy body dementia and the care partners who come after them,” Dr. Fleisher said.
Making a Tangible Difference Care partners, patients fuel Dr. Fleisher’s work through philanthropy
Pensyl and Manak are dedicated not only in their actions but also through their charitable support. They suggested establishing the “Fund to Improve the Well-Being of People With Parkinson’s and Their Caregivers” this year so that their contributions and gifts from others will safeguard Dr. Fleisher’s research time, help her hire the right people to advance her work and inspire like-minded people to contribute.
Dr. Fleisher’s work benefits from the philanthropic support of patients and their care partners. Inspired by the attentiveness and thoroughness of the care she received, Elena Urschel has supported Dr. Fleisher’s work since 2020. “She’s such an advocate, and her passion for helping people and living better align so beautifully,” Dr. Fleisher said.
Dr. Fleisher explained advocacy and support for the type of research she does is critical, as it is often not as tangible to potential funders as the discovery of a protein or gene.
The model Dr. Fleisher is developing will lessen stress for everyone and benefit other fields, Urschel said.
Pensyl recalls her mentor from Dr. Fleisher’s first research project at RUSH inspired her own continuing advocacy for Parkinson’s patients and their care partners.
“Many donations are given for cures of diseases, and that is very noble and good,” Urschel said. “However, I believe it is just as important for the quality of life to improve while we are finding a cure.”
“Although his first wife died many years ago, my mentor is still involved in advocacy and moderates a support group for atypical Parkinson’s patients and their care partners,” she said. “He continues to mentor me.”
Urschel added that she knows her disease will progress, and she wants her daughter, who serves as her care partner, to have resources and support.
Manak added that the more he learned about the disease, the better he was able to process some of the things his wife said or did.
“I don’t want her to be so stressed that she gets sick, too,” Urschel said. “I don’t want to be a burden to her. It helps patients, too, knowing their caretaker has someone to go to. I have some answers but not all. For my daughter to talk to someone who is going through the same thing could be so reassuring.”
“Claire and I have talked extensively about how physicians are called movement disorders specialists, but movement is such a small piece of what Ira and Ro had to deal with,” Manak said. “We want to support what Dr. Fleisher is doing because it’s a different perspective on care for people with Parkinson’s and their care partners.”
Experienced care partners Claire Pensyl and Tom Manak praise Dr. Fleisher as one of the only researchers focused on both people with Parkinson’s disease and their care partners.
To contribute directly to Dr. Fleisher’s work, visit rushgiving.com/wellbeingparkinsons.
“The Parkinson’s world is frustrating because there’s little focus
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Finding the Right Genes: The Growing Role of Genetics in Parkinson’s Disease and the Hope for Breakthroughs The symptoms and progression of Parkinson’s disease vary in each person diagnosed with the condition. Now, thanks to research breakthroughs related to genetics, we are beginning to understand the biological reasons why.
have helped researchers uncover dozens of genes associated with Parkinson’s disease, with more genetic links regularly being discovered. Current estimates suggest that about 15% of Parkinson’s disease cases are associated with a known genetic mutation. The most ambitious research effort to date was launched in 2021. The Global Parkinson’s Genetics Program, or GP2, is a collaboration among nearly 100 research groups around the world formed to understand the genetic architecture of Parkinson’s disease by studying the genomes of more than 150,000 volunteers.
Even more exciting: Work steered by multiple researchers at RUSH is fueling the development of promising new treatments informed by new knowledge about the genetic underpinnings of Parkinson’s.
RUSH University Medical Center is a key member of GP2, contributing genetic information from hundreds of consenting patients so far. Many of the samples RUSH investigators have collected and sequenced are through studies funded by philanthropy.
“This is a dramatic change in the Parkinson’s disease landscape — reminiscent of what has happened in cancer treatment over the past several years,” said Deborah A. Hall, MD, PhD, director of the RUSH Parkinson’s Disease and Movement Disorders Program and The Parkinson’s Foundation Chair of Neurological Sciences. “Ten years ago, we would not have necessarily offered gene testing to most patients. Now we do so, not just to improve our diagnoses but to open doors for patients to specialized therapies based on their underlying gene mutations.”
“Our research in genetics simply would not be possible without support from donors,” said Dr. Hall, who is an investigator on GP2 research studies.
RUSH and the Worldwide Search to Uncover the Genetic Links to Parkinson’s
The most rapidly advancing studies and clinical trials are focused on the two most common genes associated with Parkinson’s in the U.S.: GBA1 (glucocerebrosidase 1) and LRRK2 (leucine-rich repeat kinase 2). These and other genes
The Emerging Connection Between Genetics and Disease
Scientific endeavors such as the Human Genome Project
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have been shown to increase buildup of alpha-synuclein, the protein that becomes deformed and aggregates in the brains of people with Parkinson’s.
essential role in explaining the complex results of genetic tests to patients. “We gather information from patients, relatives and caregivers about personal and family history of disease and provide education about the risks, benefits, costs and limitations of genetic testing,” explained Marc Rosenbaum, MS, RUSH’s certified genetic counselor. “Genetic counseling visits provide the opportunity to discuss complex genetic information before and after pursuing genetic testing, which can also include a review of genetics-related and gene-specific research studies and clinical trial opportunities for conditions like Parkinson’s disease and other movement disorders.”
Somewhere between 5-10% of people with Parkinson’s disease are estimated to have a mutation to the GBA1 gene. Studies show these patients are more likely to experience disease onset earlier in life. A higher prevalence of cognitive challenges and nonmotor symptoms has also been documented among patients with GBA1-associated Parkinson’s disease. Therapeutics emerging in the past few years — designed specifically for people with these types of gene mutations — provide cause for optimism. RUSH is a site for many of these initial clinical trials.
RUSH’s program hired a full-time genetic counselor several years ago, and orders for gene testing and recruitment into trials for patients with specific gene mutations continue to grow. Compared with other movement disorders programs, RUSH’s program is still ahead of the curve in having a genetic counselor so deeply embedded in the care team, said Dr. Hall, who credited donors for their support.
“What we’re hoping is that these personalized treatments will be game-changing in slowing progression of the disease by targeting the biological pathways being impacted by gene mutations,” Dr. Hall said.
“These exciting developments urge us to recommend gene testing for the patients who come to our clinic,” Dr. Hall said. “I’m confident these advances in genetics are moving us closer to discovering the holy grail in Parkinson’s disease research — slowing down progression of the disease.”
Genetic Counselors: Critical Members of the Movement Disorders Team Experts in neurogenetics are quick to underscore the complexity of research findings. Just because someone has a gene mutation associated with a higher risk of Parkinson’s disease doesn’t automatically mean they will get the disease or pass it on to offspring. Genetic counselors play an
Shaping a New Discovery in People of African Descent with Parkinson’s Current findings related to Parkinson’s disease genetics are limited by the fact that most studies have relied on data from people of European descent. Research into the gene changes that may cause Parkinson’s in Black and African American people is a knowledge gap in the field — a gap RUSH researchers are working to fill. Dr. Hall is a co-investigator on a team of researchers leading the Black and African American Connections to Parkinson’s Disease Study, or BLAAC PD, for short. With an enrollment target of 600 participants, it’s the largest-ever study of its kind. Just this August, the research group made national headlines when it published findings in The Lancet Neurology. The team discovered a variant of the GBA1 gene found almost exclusively in people of African descent. Those who carried a single copy of the gene were about 50% more likely to develop Parkinson’s. People with two copies saw their risk increase by nearly 400%. “This discovery offers hope that we can develop therapies specifically targeting this genetic variant found in people of African descent with Parkinson’s disease,” Dr. Hall said. “This is the promise of precision medicine in neurology, and it’s only the tip of the iceberg.”
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Targeting Neurological Symptoms’ Effects on the Human Experience While motor symptoms of Parkinson’s disease are often the most widely recognized, neurological symptoms are common and affect patients’ day-to-day quality of life. RUSH experts seek to better understand, evaluate and treat these symptoms.
Creating Social Connections
validated tools to serve people with Parkinson’s disease.
Examining effects of loneliness on motor and nonmotor symptoms of Parkinson’s disease
Dr. González and his team enrolled more than 180 participants in their study and began collecting data in February. Recruitment will end this fall, and results will be disseminated soon after. The team aims to create resources for other researchers and clinicians to measure social connection and better understand the complex web of loneliness and Parkinson’s varied symptoms.
Loneliness — the discrepancy between desired relationships and actual social connections — is linked to poor health and has increased in people with Parkinson’s disease, particularly since the COVID-19 pandemic. In the general population, it is related to increased mortality risk, cognitive decline, less physical activity, reduced motor functioning and increased depression. Previous research has shown that loneliness leads to a 49% increase in dementia risk over an average of six years.
“Preliminary results reveal loneliness seems to be related to the daily functioning of people with Parkinson’s disease and how they feel it’s limiting their daily activities,” Dr. González said. “There seems to be something about the disease that’s limiting not just the number of people they see but the quality of those relationships. We need to explore that further.”
Loneliness poses such grave mental and physical health risks that U.S. Surgeon General Vivek Murthy released an advisory about the epidemic of loneliness and isolation in early 2023, bringing national and international attention to the issue.
Study participants complete a survey packet that includes a loneliness scale and depression screening. Participants are asked to provide information about their social network size, perceived social support, life space circumference and quality of life. Survey responses are then linked to information about participants’ disease progression and symptoms.
Despite its known comorbidities, loneliness is understudied in Parkinson’s disease. To learn more about its presentation in this population, David A. González, PhD, ABPP, neuropsychologist in the Department of Neurological Sciences, launched a study to examine the relationship between motor and nonmotor symptom severity and loneliness. This study will also cross-validate isolation and loneliness scales so professionals can have a range of
Dr. González and his team also collaborate with Robert S. Wilson, PhD, professor of neurological sciences at the RUSH Alzheimer’s Disease Center, who was one of the first neuropsychologists to examine the connection between
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loneliness and dementia. The center treats a subset of patients with Parkinson’s, and Dr. González hopes to examine their experiences with loneliness over time.
A potential treatment for loneliness is social prescribing, or connecting patients with peers, social organizations or even volunteer opportunities. The stigma of the disease may prevent people from attending functions they were involved in before their diagnosis, so finding alternatives that make them feel comfortable, engaged and connected is key.
Through his day-to-day clinical work, Dr. González evaluates patients’ cognition and mental health to help them fine-tune their treatment plans. He has always been aware of the relationship between socialization and cognitive health, which has been studied in Alzheimer’s disease and geriatric medicine broadly, but he recognized it had not been studied specifically in Parkinson’s disease.
“Sometimes Parkinson’s robs people of their sense of worth and contribution,” said Dr. González, whose next research steps include engaging more people with advanced Parkinson’s disease and possibly integrating wearable devices to study participants’ community mobility. “Finding other ways to allow people with Parkinson’s to share some of their wisdom, experience and knowledge can reduce loneliness by helping reemphasize the value and worth they have.”
“I noticed it was coming up more in this patient population,” Dr. González said. “Ultimately, we do want to attack the disease, but I like being able to zoom out and bring attention to the human living with the disease.”
Charting New Horizons
labyrinth with ever-shifting walls,” Dr. Tosin said. “The need for a comprehensive and standardized functional rating scale to assess the impact of PDP manifestations and treatment effects is self-evident.”
Creating a new functional rating scale to illuminate the shadows of Parkinson’s disease psychosis The pursuit of a comprehensive understanding of Parkinson’s disease psychosis, or PDP, has captivated researchers, clinicians and patients worldwide. PDP may involve illusions, hallucinations and delusions that significantly affect quality of life for people with Parkinson’s disease and their care partners. Pioneering work led by RUSH’s Michelle Tosin, PhD, MSN, research scientist, and Christopher Goetz, MD, professor and director of strategic growth and innovation, has led to the development of a novel functional rating scale to measure the effect of PDP on a person’s daily life. This work is poised to transform the field’s approach to treating PDP and has been generously sponsored by the International Parkinson and Movement Disorder Society through a grant from Acadia Pharmaceuticals. “Understanding PDP is intricate, like navigating a
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Drs. Tosin and Goetz began work in 2022 to develop a precise, scientifically validated tool to assess PDP symptoms, measure its effects on daily life and evaluate its response to therapeutic interventions. The researchers plan to launch this functional rating scale in late 2024 to empower clinicians and researchers to personalize treatments, monitor symptom progression and evaluate the efficacy of therapy in clinical trials while focusing on what matters to patients. Dr. Tosin hopes the scale will enhance the accuracy of clinical trials, accelerating potential treatments and offering hope to people with Parkinson’s disease. “We invite donors, partners and advocates to join us on our journey of discovery,” Dr. Tosin said. “Together, we can make a difference in the lives of those affected by Parkinson’s disease and usher in a new era of understanding, treatment and hope.”
Together, movement disorders specialist Mitra Afshari, MD, MPH, and neuropsychologist David A. González, PhD, ABPP, collaborate to provide care to patients receiving deep brain stimulation. They also partner on efforts to run a support group for Spanish-speaking people with Parkinson’s disease and help patients overcome socioeconomic and language barriers to care through the creation and equitable distribution of educational resources.
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Notes From Our Labs and Clinics Donor support makes advancements in care and research possible. It provides essential seed funding that secures research time, personnel and other necessities that fuel innovation and progress. The following research and clinical care updates were driven by our generous community of supporters.
Building Upon Research Leadership in Rating Scales: A Key to Studying Early Parkinson’s Disease Progression
Dr. Goetz and his collaborators are now advancing research — utilizing sophisticated statistical modeling techniques — to better identify salient items in the MDS-UPDRS that are most subject to change in the very first phases of Parkinson’s disease. Their aim is to identify a shorter inventory that can be used to chart the impact of new interventions targeted at slowing the natural progression of the disease in the first five years after diagnosis.
To characterize the severity of Parkinson’s disease in each patient, doctors rely on rating scales — validated tools that measure the motor and nonmotor symptoms of the disease and the effect they have on a person’s daily living. In the clinic, rating scales are essential for tracking disease progression. In clinical trials and research, they are invaluable for studying the benefits of therapeutic interventions.
“Our analyses may also reveal powerful indicators of presymptomatic Parkinson’s disease,” Dr. Goetz said. “Such items could be assessed in large populational or epidemiological studies aimed at identifying the disease earlier than is now possible.”
Although the first rating scales emerged in the 1960s, RUSH’s Christopher Goetz, MD, a pioneer in developing and refining these tools through research, gives credit to the teachings of a French neurologist who practiced more than 100 years prior.
Seeking Relief for Apathy Following DBS Treatment: Notes From the Lab of Alana Kirby, MD, PhD
“Today’s specialists owe a great deal to Jean-Martin Charcot, the most celebrated neurologist of the time, whose core observations related to Parkinson’s disease in the 19th century pushed physicians to define the many distinct features of the disease,” Dr. Goetz said. “Charcot’s teachings remind us that patients’ manifestations of Parkinson’s disease are always unique, individualized and highly personal in terms of priorities and nuances.”
When people with Parkinson’s disease receive deep brain stimulation, or DBS, to treat motor symptoms of the disease, apathy — loss of motivation that is a common nonmotor symptom — can worsen after treatment. Alana Kirby, MD, PhD, assistant professor in the Department of Neurological Sciences, and T. Celeste Napier, PhD, professor in the Department of Psychiatry and Behavioral Sciences, have partnered to seek solutions for patients who experience these troubling symptoms.
In 2008 Dr. Goetz led the international effort to better capture the uniqueness of each patient’s disease in rating scales. This resulted in the Movement Disorder Society Unified Parkinson’s Disease Rating Scale, or MDS-UPDRS, now the most widely used international measure of Parkinson’s disease severity. The MDS-UPDRS has been officially translated into 25 non-English languages.
“People with apathy still enjoy doing things, but it’s harder for them to get going,” Dr. Kirby said. “Positive things don’t seem to be as necessary to pursue. Negative things don’t seem
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Alana Kirby, MD, PhD, and T. Celeste Napier, PhD, observe how much time rats spend in a burrowing tube (pictured above) before and after receiving a lesion that creates Parkinson’s-like symptoms and before and after receiving deep brain stimulation.
to be as necessary to avoid. It worsens quality of life and increases caregiver strain.”
role of each pathway independently and then put them back together. This provides complementary information to what is available in observations of people with Parkinson’s disease who have received DBS. This understanding will be useful in designing approaches to recognize and prevent apathyrelated brain changes due to DBS.
Drs. Kirby and Napier and their team aim to determine the time course of apathy-like behaviors during and after DBS of the subthalamic nucleus in the brains of rodents. With philanthropic support, they are observing motivationdependent behaviors in groups of rats with Parkinson’s-like symptoms who undergo DBS. Natural behaviors, such as exploring new objects, burrowing and grooming, are being combined with training to perform a simple task for a food reward to form a group of tests to assess motivation.
“The power of optogenetics holds promise to allow clinicians to selectively stimulate pathways that improve mobility while other areas of the brain are left untouched,” Dr. Kirby said. Donor support has enabled Drs. Kirby and Napier to gather enough evidence to apply for and successfully obtain an R21 Exploratory/Developmental Research Grant Award from the National Institutes of Health to identify biomarkers that can be used to predict when DBS may result in disorders of mood or cognition and how to improve DBS protocols to reduce nonmotor adverse effects.
“We cannot ask rats what they are feeling, so we carefully observe their behavior in performing tasks that mirror human activities that are worsened by apathy and how these behaviors are changed by DBS,” Dr. Kirby said. Dr. Kirby is an expert in optogenetic stimulation (using light to control the activity of neurons), a leading-edge research technique that can be used in animal models to see precisely how DBS stimulation affects individual brain pathways. The subthalamic nucleus is a key hub in the brain that connects with brain areas that control movement, mood and motivation. Optogenetics allows Drs. Kirby and Napier to examine the
Investigating Disease Pathology: Notes From the Lab of Bryan Killinger, PhD The laboratory of RUSH’s Bryan Killinger, PhD, assistant professor in the Department of Neurological Sciences, continues to advance its work studying the behavior of
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alpha-synuclein, the protein that aggregates into structures called Lewy bodies in the brains of people with Parkinson’s disease and related neurodegenerative conditions. A recent area of the lab’s focus has been phosphorylated alphasynuclein, a specific form of the protein strongly associated with Parkinson’s. Little has been known about this form of the protein, even in the brains of healthy people — until now.
Dr. Afshari is currently working to enroll 33 patients in a subsequent study to evaluate a modified home-safety selfassessment tool for virtual home safety evaluations. The tool identifies common hazards and potential modifications to reduce the risk of falls, such as grab bars, motion-sensing lights and furniture risers. “One of the biggest pieces we learned from the pilot study is that these virtual home tours are really successful across the board for Parkinson’s disease patients,” Dr. Afshari said. “We want to operationalize this and make it easier for people to follow.”
In a key publication this year in the international journal NPJ Parkinson’s Disease, Dr. Killinger and his collaborators shared findings that phosphorylated alpha-synuclein normally accumulates in a brain structure called the olfactory bulb. Their unexpected finding is of great importance to the field because the Parkinson’s disease process has been hypothesized to begin in the olfactory bulb. This brain structure plays a central role in helping people process odors, and loss of smell is considered an early warning sign of Parkinson’s disease.
Preliminary data informed a submission to the journal Neurology Clinical Practice and an application for a K23 Mentored Patient-Oriented Research Career Development Award from the National Institutes of Health to study telehealth interventions at scale, combining recommended environmental modifications with behavioral modifications. Previously, Dr. Afshari received the prestigious 2022 Mentored Clinical Research Award from the Parkinson Study Group to advance this work.
“We observed a ‘bad actor’ in the very spot of the brain where the disease process may begin,” Dr. Killinger said. “Our findings were corroborated by colleagues at Harvard, and we have been working with this team, utilizing their novel mutant mouse model, to expand on our findings.”
Dr. Afshari also works on community outreach efforts to improve access to Parkinson’s disease care for communities that have historically received inequitable health resources. Dr. Afshari partners with David A. González, PhD, ABPP, neuropsychologist in the Department of Neurological Sciences, and Andrea Hernández, clinical research coordinator, to expand efforts to reach Spanish-speaking Parkinson’s disease patients and their families.
Reducing Falls and Inequities: Research Notes From Mitra Afshari, MD, MPH Approximately 60% of people with Parkinson’s disease fall each year, resulting in hospitalizations and reduced quality of life. Most of these falls occur in people’s homes, where behavioral and environmental factors can be modified to reduce risks. Mitra Afshari, MD, MPH, assistant professor in the Department of Neurological Sciences, seeks to improve health outcomes for people with Parkinson’s disease through technologyenabled care. She has been at the forefront of telehealth research in the field, even before the COVID-19 pandemic increased interest in telemedicine. In a pilot of a virtual fall prevention program, Dr. Afshari and her team found telerehabilitation to be feasible and safe, resulting in patients making progress with physical and occupational therapy goals and reducing home safety hazards.
As director of the Movement Disorder Interventional Program at RUSH, Neepa Patel, MD, is interested in improving the quality and delivery of care for patients receiving deep brain stimulation.
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The group will host three webinars for this population, specifically regarding nonmotor symptoms of the disease. The webinars will feature local and national speakers and assess participants’ retention of knowledge through pre- and post-webinar quizzes.
bacteria that are abundant in the GI tracts of people with Parkinson’s. Participants in the pilot study found the bar helped decrease the severity of GI symptoms. The RUSH researchers plan to build on these studies — in a clinical trial conducted over a longer time period with more participants — to see if patients’ motor symptoms can improve through dietary supplementation with special prebiotics.
Dr. Afshari also hopes to expand RUSH’s support group for Spanish-speaking patients with Parkinson’s disease and their care partners by spreading the word about the group within the clinic and the community.
RUSH Celebrates 250th MR-Guided Focused Ultrasound Procedure
RUSH Study of Prebiotics in Parkinson’s Disease Featured in Nature Communications
In 2019 RUSH became one of the first health systems in the nation to offer patients a minimally invasive procedure to treat essential tremor and motor symptoms of Parkinson’s disease. MR-guided focused ultrasound, or MRgFUS, is a nonsurgical procedure that focuses sound waves inside the brain to interrupt faulty circuits that cause tremors and related symptoms.
Backed by years of philanthropic support, a collaborative team of RUSH researchers has been a driving force in researching the links between gastrointestinal health and Parkinson’s disease. Around 80% of people with Parkinson’s report abnormal GI symptoms, and constipation can be one of the earliest signs of the disease.
This year, RUSH physicians celebrated performing the health system’s 250th MRgFUS procedure. The landmark procedure was performed on John Roberts, whose tremor impacted his ability to perform everyday tasks such as eating, drinking and writing. The treatment significantly reduced his tremor and enabled him to enjoy his first cup of coffee in 10 years.
In a 2023 publication in the prestigious journal Nature Communications, RUSH researchers shared promising findings from a pilot study in 20 people with Parkinson’s. For 10 consecutive days, study participants ate a prebiotic fiber bar designed by faculty at RUSH and collaborators at Purdue University. The prebiotic mixture is specially formulated to support good bacteria in the gut that offset pro-inflammatory
To learn more about his story, visit rush.edu/250-ultrasounds.
In Gratitude Donor support fuels the progress we make in our clinics, labs and classrooms. Our strong community of supporters and friends advances our efforts to improve life for people with Parkinson’s disease and other movement disorders and their care partners while we look with hope toward a future cure for these conditions. Thank you for your ongoing partnership and commitment to our work.
To support the Parkinson’s Disease and Movement Disorders Program at RUSH or learn how you can continue your legacy of support through an estate gift, scan the QR code, visit rushgiving.com/pdimpact or contact: Brigid Mullen Executive Director of Development (312) 942-4460 brigid_t_mullen@rush.edu
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