Expert Briefing: Research Update: Working to Halt PD
April 10, 2024
There is still a lot we don’t know about Parkinson’s disease (PD), and through research, efforts are being made to close the gaps in our knowledge and understanding. In addition to the development of new therapies for symptom management, research also seeks to find ways to stop progression and ultimately end PD. During this Expert Briefing, we will learn about current research that is taking various approaches to develop a treatment that may significantly slow PD’s progression.
Lorraine Kalia, MD, PhD, FRCPC, Associate Professor
Division of Neurology, Department of Medicine at the University of Toronto
Toronto Western Research Institute
Tanz Centre for Research in Neurodegenerative Disease
Raise Awareness
Breaking Boundaries in Parkinson's Care: The Vision of Ruth Hagestuen
Since every person has a unique Parkinson’s disease (PD) experience, building a diverse team of health experts allows them to manage their PD symptoms and progression — and maximize quality of life. No one understood this concept better than Ruth Hagestuen RN, MA, the founder of the Parkinson’s Foundation Team Training program, an interactive program designed to train healthcare teams in PD care.
Ruth passed away on February 23, 2024. This article is dedicated to Ruth and how she shaped Parkinson’s care, ultimately evolving how the Parkinson’s Foundation works to bring access to care to more people with Parkinson’s.
In a 2018 podcast episode, Ruth spoke about the Team Training program and its design. “The reason we decided to launch this program is that people with Parkinson’s were going for care and were not able to find professionals that knew PD well enough to give state-of-the-art care,” Ruth said. “We want every person that goes to the program to understand the best we know to date about Parkinson’s.”
In 2000, Ruth joined the Parkinson’s Foundation as Vice President and Program Director, where she launched the Team Training program in 2003. She worked with affiliates nationally and internationally to develop strategies to better meet the needs of the PD community through research, education, care and outreach.
2023 marked 20 years for the Parkinson’s Foundation Team Training program. Since inception, more than 2,900 health care professionals have graduated from the program, which has been hosted in cities across the U.S. and offered virtually.
Ruth’s dream to train professionals continues to reach further, as Team Training alumni collectively treat nearly 200,000 people with Parkinson’s across the country each year.
Her legacy continues to impact people living with PD and the healthcare professionals who complete Team Training — including neurologists, nurses, social workers, rehab therapists and others.
“Ruth was a visionary in the Parkinson’s disease space. For decades, as a nurse she personally brought comfort and care to thousands of people living with the disease during her career, she ran one of the early leading PD centers in the U.S., and through Team Training, she helped train thousands of healthcare professionals,” said Eli Pollard, Parkinson’s Foundation Vice President and Chief Training and Education Officer. “She achieved so much and will forever inspire us at the Foundation to do more.”
Ruth’s dedication to helping people goes back to the beginning on her nursing career when she served as an Air Force nurse in the Vietnam War. Afterwards, she lived and worked for 13 years as a nurse and partner in developing health care programs in Madagascar and Bangladesh.
In 1987, she accepted the position as nurse coordinator and program manager of the multidisciplinary team in the Parkinson’s clinic at Methodist Hospital, which ultimately expanded to become the Struthers Parkinson’s Center, a Parkinson’s Foundation Center of Excellence, where Ruth worked as Program Director.
“Ruth was tenacious in her willingness and endurance in the pursuit to improve Parkinson’s care,” said Denise Beran, Parkinson’s Foundation Associate Director of Professional Programs. “It has been a privilege to know Ruth as a colleague and as a friend over the past 20 years, and it’s an honor to keep her legacy of professional training alive, continuously improving, seeking the best proven therapies and outcomes to share with health care professionals so they can provide the best possible care.”
As a speaker and writer, Ruth co-authored the book Health Connect, a Practical Guide to Community Outreach. She also co-authored two publications based on the effectiveness of team care education and facilitated outreach to underserved communities to provide culturally competent, interdisciplinary PD care — nationally and internationally. She was also the Parkinson’s Foundation consultant to the Edmond J Safra National Parkinson’s Wellness Initiative.
Ruth was also active in the International Parkinson’s and Movement Disorders Society, where she served on the Pan-American Section Education Committee.
Kind Words from Our Parkinson’s Community
“Ruth embodied holistic nursing, recognizing the importance of looking beyond the physical symptoms of Parkinson’s. Her work in promoting interprofessional team care as best practice in Parkinson’s forever changed the landscape of care for families living with Parkinson’s.”
- Joan Gardner, RN, BSN, former colleague and life-long friend, former nursing faculty of Team Training
“Ruth was a creative individual with a passion for ensuring that all individuals with Parkinson’s received comprehensive interdisciplinary care. Her life’s work will always be recognized and celebrated within the Parkinson’s community. I am honored to call her my colleague and friend.”
- Rose Wichmann, PT, former colleague and life-long friend, former PT faculty of Team Training
“When I think about Ruth, she is the reminder to follow what you believe in, and in the end, you reach something even better and bigger than you imagined. She was a force within nursing, patient care and education. She advocated not only the education of people with Parkinson’s and their care partners, but also the education and growth of other medical professionals.
- Jenna Iseringhausen, MS, NP, AGPCNP-BC, mentored by Ruth and currently a nurse faculty of Team Training
The Parkinson’s Foundation remembers Ruth’s contribution to the Parkinson’s care field and her direct influence in helping shape Foundation programs that make life better for people with Parkinson’s. Ruth is survived by her wife, Bonnie, her children and grandchildren.
If you are a person living with Parkinson’s and want to find a PD-trained healthcare professional, contact our Helpline at 1-800-4PD-INFO (1-800-473-4636).
Meet a Researcher Working to Link Parkinson’s, Genetics and the Immune System
For decades, we have known that inflammatory changes occur in the brain of people with Parkinson’s disease (PD). But in the last few years, inflammation has been studied as a possible cause of the progressive nature of the disease and not just a result of it.
Catherine (Chi) Weindel, PhD, is studying this connection, specifically focusing on how one variant or mutation of the Parkinson’s disease-linked gene LRRK2 impacts immune health. She hopes this research will pave the way for a deeper understanding of how Parkinson’s starts and progresses, along with avenues for potential new therapies.
LRRK2 and PD
The LRRK2 gene plays a role in about 1% of all people with PD and 5% of those with a family history. LRRK2 variants are autosomal dominant — this means that inheriting only a single mutated copy of a gene from one parent can potentially lead to disease. Mutations in LRRK2 can result in the enzyme becoming overly active in the brain, leading to cell death in ways we do not yet fully understand.
“My research involves the study of the immune system. What I am interested in is determining how the immune system might be different in people with Parkinson’s genetic mutations, which would cause a difference during an infection or in response to an environmental toxin,” said Dr. Weindel. “I am studying how alterations or modulations in an immune response could build up over time, piece by piece, and might predispose someone to develop Parkinson’s later in life.”
When Dr. Weindel first began investigating Parkinson’s, she suspected that immune system inflammation, triggered by illnesses and loss of dopamine neurons outside the
brain, could ultimately lead to the development of the disease. This line of thinking led to her Parkinson’s Foundation Postdoctoral Fellowship, where she designed a study to explore how a LRRK2 G2019S mutation may impact mitochondria, which provide energy for a cell, when immune cells have been stressed by infection.
She discovered that during an infection, when immune cells with LRRK2 mutations die, they uniquely increase inflammation that promotes the spread of bacteria throughout the body. This cell death seems similar to what researchers find in brains of people and mice with PD.
Now, as a 2022 Parkinson’s Foundation Launch Award recipient, Dr. Weindel is taking her research a step further to gain a deeper understanding of how LRRK2 gene mutations cause cell death in immune cells in the brain. This will lead to the identification of new targets for Parkinson’s therapy that may better control inflammation, for instance. Her research will also help design improved genetic tests to give families with a history of Parkinson’s better insight into their risk for developing PD.
According to Dr. Weindel, genetics research is vital to understanding the connection between Parkinson’s disease and the immune system’s response because even when family members have the same PD mutation, the disease may present itself differently in each person. By looking at complex genetic interactions, we can see alternative pathways impacting specific individuals, which can dictate better clinical trials or potential therapies.
“My goal is to develop therapeutics that will allow for a more personalized medical approach,” Dr. Weindel said. “Because Parkinson’s is such a diverse disease, a cure-all is very unlikely. Ideally, a particular therapeutic can one day be designed for an individual based on the genetic makeup of their Parkinson’s.”
Gustavo A. Suarez Zambrano, MD, Vice President of Medical Affairs at Mitsubishi Tanabe Pharma America, Inc.
Growing up in Colombia, Gustavo A. Suarez Zambrano, MD, always knew he wanted a career where he could help people – though he didn’t know his path would eventually lead to studying Parkinson’s disease (PD) in the U.S.
Dr. Suarez worked for several years as a general physician in hospitals across South America before finding his true passion in neurology. Then, after working for four years as a general neurologist, he realized he wanted to become more specialized. This prompted his move to the U.S., where he secured an opportunity at Baylor College of Medicine, a Parkinson’s Foundation Center of Excellence, to study and support research in multiple sclerosis (MS).
After several years in the MS space, Dr. Suarez decided to take on a new challenge. He joined Mitsubishi Tanabe Pharma America (MTPA) with the goal of getting involved in movement disorders and PD, areas where treatment options are still quite limited.
Right now, many people living with PD experience a decline in efficacy of oral standard of care medication as their disease advances. This requires them to take multiple doses throughout the day to try to control their symptoms, which can often lead to the occurrence of uncontrolled motor fluctuations such as involuntary movements or dyskinesia.
Providing therapeutic options that can positively impact people with PD, especially those impacted by motor fluctuations, is an area of high unmet need. Dr. Suarez’s work at MTPA focuses on trying to address this gap. He understands the critical need for minimally invasive treatment options that could help address these symptoms.
In addition to supporting research and discovery into new treatment options to meet the existing therapeutic needs, Dr. Suarez is also passionate about bridging the education gap to support people with PD, caregivers and healthcare providers in understanding new data and advancements in the field. Therapeutic options are only useful if those living with the disease and those treating the disease are informed and receptive to them.
After many years in neurology, Dr. Suarez now spends a significant amount of his time trying to find new ways to tackle the unmet needs and challenges of Parkinson’s disease, including motor fluctuations, and is committed to continue exploring treatment options for people living with this disease.
For more information on PD and understanding motor fluctuations, visit SpeakParkinsons.com.
For having lived with Parkinson’s disease (PD) for many years, I had no answer to the question of how I got this disease. No family members had Parkinson’s. I didn’t even know friends, neighbors, nor work associates with Parkinson’s. Here’s my story.
Around 31, a tremor started in my right arm — I was diagnosed with essential tremor. Additional symptoms appeared over the next 12 years. Symptoms were treated as individual issues and my life went on with a hand in my pocket, to hide the tremor.
At 40, one morning I was met with a poison ivy rash on my arm. Benadryl was taken to dry up the rash. Family members observed improvements in certain PD symptoms during this time. Without knowing, Benadryl was my first treatment for PD.
My gait started to change when I turned 42. At my sister’s wedding reception, the band started to play polka and I gestured to my mom, let’s go. However, my feet were not cooperating with the requirements of the dance. My feet were glued to the floor (now I know this is called a freezing episode). That was not dancing the polka.
The poison ivy and polka incidents motivated me to see a doctor for a second time. This resulted in my official diagnosis. At 42, I was diagnosed with PD.
The next 18 years involved treating my symptoms and living a normal life. My PD was progressing very slowly and life was good. At 60, I woke up one day and decided it was time to retire.
I jumped right into retirement and my physical activity increased without an understanding of my limits. The result was a rotator cuff tear in my shoulder, which required surgery. Activities were very limited during recovery. I joined the Parkinson’s Foundation as a volunteer to get off the couch.
I participated in PD GENEration: Mapping the Future of Parkinson’s Disease initiative. Roughly six weeks after submitting my genetics tests, my report from the lab detailed that the cause of my Parkinson’s was genetic. My question of “How did I get this disease?” was finally answered. This means that my initial tremor was likely misdiagnosed.
There are many volunteer roles in the Parkinson’s Foundation and my interest settled on giving presentations in the community. First, I needed to complete the Ambassador training which was very helpful and increased my PD knowledge. My motivation to pass the training quickly became my reality and I became a Parkinson’s Foundation Ambassador for the Georgia Chapter.
My duties as an ambassador include tabling at conferences, helping at our symposium, helping with site reviews, and reporting on grant recipients, and presenting “PD 101” in the community. I increased my duties to become the Chair of the Georgia Chapter Mission & Outreach Committee where my leadership qualities are used to define roadmaps and subcommittees, and track progress for the chapter.
Over the years, every Thanksgiving I am thankful for poison ivy, the polka, and a torn rotator cuff. These were the important events that helped me gain clarity of my past and find a sense of purpose for the future.
I unabashedly tell people that I am a selfish volunteer. Everything I do is to help my brother, Greg.
Selfishness is normally considered a negative characteristic, but in this case, I’m proud to be a selfish volunteer for the Parkinson’s Foundation. Luckily, everything I do for the Foundation helps Greg, and vicariously helps others too! I think that’s pretty positive.
My volunteer history with the Parkinson’s Foundation started more than a decade ago — soon after my brother was diagnosed. He hadn’t even turned 50 and was already displaying a range of symptoms. Each successive symptom seemed nastier than the previous. I was scared for him and for the rest of my family.
While I was researching everything I could about the disease out of fear that I could also “get” Parkinson’s, I jumped into the Foundation’s local chapter with both feet on the ground and arms in the air. I learned so much at the Annual Symposium that I demanded every family member of mine attend the next year and we’ve gone every year since!
At the time of Greg’s diagnosis, I worked as a local news reporter. I decided I would produce as many stories as I could about PD. I interviewed neurologists and shot footage of my brother’s symptoms to show what Parkinson’s can do to a human. Greg did not mind being my “example” and he shared the personal side of the disease, beyond the tremors. He talked about his frustration, the isolation, the hopefulness and the hopelessness. I learned so much! Through my videos and published stories, we helped generate awareness of the disease and more importantly, shared information about all the support services available to people with Parkinson’s in my area.
I joined the local board and now sit on the Parkinson’s Foundation New York & New Jersey Chapter board. Being a board member gives me direct access to those on the front lines in this battle. I like knowing what’s being accomplished all around the country. I pay attention to all the research projects and funnel the information to my brother so he can discuss them with his doctors. (I told you I was selfish — Greg comes first).
Recently, one of my high school friends, Cindy, was diagnosed with PD. I forward information to her, too. I also send it to my family members. The more they know about this disease, the more we can do to help Greg, Cindy, and everyone living with PD.
I have been on the Moving Day committee for close to 10 years. First, as the event emcee and now as a full-blown committee member. I run the Facebook account for the Moving Day group. I share information with local media organizations and set up interviews for Foundation officials and other people with PD to appear on local television. These are tasks I am more than capable of doing and I’m happy to share my skills. We all have some skill to offer.
Approximately 90,000 people will be diagnosed with Parkinson’s in the U.S. this year. All those people and their families will need help understanding how this disease will impact them (explore Parkinson’s Foundation resources here). We need more people to be selfish and get involved. Whether you get involved for yourself, a family member, or a friend, your selfishness might actually be the most positive character flaw you have!
New research reveals the complex changes happening in different cell types in the brain that are affected by Parkinson's and identifies a unique population of neurons.
A hallmark of Parkinson's disease (PD) is the death of brain cells called dopaminergic neurons in a part of the brain called the substantia nigra. For people with Parkinson’s, these neurons stop producing dopamine, which helps control the body's movements and moods. However, it’s not clear if other types of cells are also affected.
A new study published in Science Advancesidentifies a new type of neuron associated with Parkinson’s. By looking at which genes were turned on and off in hundreds of thousands of different cells in the substantia nigra, the researchers developed an “atlas of gene expression.” This research may help us better understand Parkinson’s, and possibly help guide the development of new treatments.
This study was led by the Parkinson’s Foundation 2022 Research Centers Principal Investigator Zhenyu Yue, PhD, and co-Investigators Joel Blanchard, PhD, John Crary, MD, PhD and Bin Zhang, PhD, from Icahn School of Medicine at Mount Sinai.
About the Study & Results
The researchers studied gene expression in 315,867 cells from the substantia nigra of people who did or did not have Parkinson's. Within the samples, the researchers identified various known cell types, including different types of neurons and other brain cells.
Interestingly, the scientists found a unique group of neurons that had an activated gene called RIT2, which past studies had shown is associated with Parkinson's risk. These cells lacked markers of other common cell types in the substantia nigra, indicating that they may be a newly recognized cell population.
However, in people who had advanced Parkinson’s, RIT2 expression was decreased compared to those without Parkinson’s, suggesting that reduced RIT2 expression may play a role in the development of Parkinson's. This may also indicate that the unique population of RIT2 neurons may be more vulnerable to the disease.
The team assembled their data on gene expression to create an atlas of different populations of single cells in the substantia nigra, which can be used to explain changes associated with Parkinson’s. They found distinct patterns of changes in gene expression in the cells marked by RIT2. Moreover, the team identified pathways of cell-to-cell communication that were altered in Parkinson’s.
Research Takeaways
The researchers are hopeful that this new data will be useful in future research. For example, while many dopaminergic neurons were lost due to advanced Parkinson’s by the time these samples were collected, many survived — their atlas may eventually help reveal what makes some neurons more resilient.
Help find clinical biomarkers for Parkinson’s. A PD biomarker would lead to faster and more accurate diagnosis and the ability to track PD progression. Right now, there is no single biomarker for Parkinson’s.
Highlights
A unique group of neurons in the substantia nigra is marked by an activated gene, called RIT2, which past studies have shown is associated with Parkinson's risk. These cells did not have markers of other known cell types, indicating that they had not been previously identified.
In people who had advanced Parkinson’s, RIT2 gene expression was reduced, which suggests it may play a role in the development of Parkinson's. It may also mean that the unique population of RIT2 neurons may be more vulnerable to the disease.
Data was converted into an “atlas of gene expression” that identifies a broad range of gene expression patterns within the cells of the substantia nigra.
What does this mean?
This research is a step towards better understanding the changes that occur in the substantia nigra during Parkinson’s. Knowing that there is a new population of brain neurons tied to Parkinson’s — in addition to the well-established dopaminergic neurons — will provide researchers with new targets to develop different PD medications. These neurons can also lead to the development of a new biomarker, which could be a breakthrough in PD diagnosis and progression tracking.
What do these findings mean to the people with PD right now?
While this study does not impact people with PD right now, the PD community can find hope in that researchers are still discovering more about this disease, and how it works. We can only solve a puzzle if we have all the pieces, and this new piece contributes to the overall battle to beat Parkinson’s.
People who are concerned that they may be experiencing Parkinson’s symptoms should talk to a healthcare provider.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and the topics in this article through our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.
Episode 166: Navigating Disparities, Ethics, and Stigma in the Black Parkinson’s Community
Black and African American people diagnosed with Parkinson’s disease (PD) face disparities in healthcare access and outcomes, potentially leading to decreased access to care, resources, and research opportunities. It is crucial to recognize their unique needs and experiences so that scientists can better understand how PD impacts diverse communities. The Parkinson’s Foundation aims to identify these healthcare disparities to better serve and support the community.
In this second episode of our Black History Month special, Dr. Reversa Joseph, Neurologist, MDS at the Columbus Ohio VA, and Dr. Hiral G. Shah, Neurologist, MDS at Columbia University Medical Center, discuss current and historical disparities in research and treatment among the Black and African American PD community. They emphasize the importance of raising awareness about PD in this community, as well as in the medical space, to better understand the diverse lived experiences of the Black PD community. They also address the need to create more PD resources that reflect the voices of the community at hand.
Released: February 27, 2024
Dr. Reversa Joseph is a Board-Certified Neurologist specializing in Movement Disorders and intraoperative monitoring. With a profound focus on treating patients with Parkinson’s disease, she employs a comprehensive and integrative approach. Dr. Joseph obtained her Bachelor of Arts degree from Columbia University, followed by her Medical Degree from Georgetown University. She completed her Neurology Residency training at Yale University and pursued fellowship training in Movement Disorders with a focus on Deep Brain Stimulation and Botulinum Toxin Therapy at Georgetown University.
Additionally, Dr. Joseph completed a fellowship in Clinical Neurophysiology at the National Institutes of Health, where she specialized in intraoperative monitoring and autonomic dysfunction in neurodegenerative disorders. Currently, she serves as the Director of the Movement Disorders Clinic at the Chalmers P. Wylie VA.
Dr. Joseph initiated a Parkinson's Multidisciplinary Care Team at the VA to enhance the care provided to veterans with Parkinson's disease. Utilizing a Whole Health approach, she integrates various modalities to offer comprehensive care for patients with Neurodegenerative disorders. Dr. Joseph is deeply committed to health equity and strives to eliminate health disparities in the care of patients with Parkinson's disease, reflecting her passion for ensuring all individuals receive equitable access to quality healthcare.
Hiral Shah, MD, is a Neurologist at Columbia University Irving Medical Center for the last 16 years. She serves as the Medical Director of the Parkinson's Foundation Center of Excellence at CUIMC. She provides clinical care for individuals with neurological disorders, with a specific expertise in Movement disorders including Parkinson's disease as well as Functional Neurological Disorders. She has served as a consultant to the World Health Organization, has training as a Global Health and Aging Policy Fellow, Global Mental Health Scholar, and Community-based Participatory Research Scholar. She serves on the Advisory Board for the Young Onset Parkinson's Network. Her approach is to address the concerns of individuals and families in a holistic manner, including addressing the physical and mental aspects of their health condition. Her research focuses on attempting to identify and address the factors that contribute to stigma and isolation with respect to Parkinson's disease and other neurological disorders.
Episode 165: Community Conversations – Re(building) Trust and Sharing Resources
Black and African American people diagnosed with Parkinson’s disease (PD) face disparities in healthcare access and outcomes, potentially leading to decreased access to care, resources, and research opportunities. It is crucial to recognize their unique needs and experiences so that scientists can better understand how PD impacts diverse communities. The Parkinson’s Foundation aims to identify these healthcare disparities to better serve and support the community.
In this first episode of our Black History Month special, Kimberly Gamble, Program Coordinator at Atrium Health, and Lance Wilson, Licensed Social Worker and Center Coordinator at Jefferson Health’s Comprehensive Parkinson’s Disease and Movement Disorders Center, share real-life examples of outreach strategies that they have used when engaging with the Black and African American community to dispel common misconceptions about research studies, and emphasize the importance of representing and showing up for your community.
Released: February 20, 2024
Lance M. Wilson is the social worker, outreach and education coordinator at Jefferson Health’s Comprehensive Parkinson’s Disease and Movement Disorders Center in Philadelphia, PA. Lance is a Licensed Social Worker (LSW) in the State of Pennsylvania and holds a C-SWHC (Certified Social Worker in Health Care) and ASW-G (Advanced Social Worker in Gerontology) which are both are specialty certifications from the National Association of Social Workers. Lance has professionally worked in the medical, mental health, and public health field for over a decade. In addition to his work with individuals impacted by Parkinson’s Disease and their care partners, Lance is also working on his PhD in Social Work at Widener University, where he hopes to add to the research of best practices within the Parkinson’s community.
Kimberly Gamble started her journey with the Parkinson’s community by God’s grace in 2004 when she applied for a position as a sleep center coordinator. By the end of the interview with the Director of Neurosciences, Kim found out she was overqualified for the position and was recommended to apply for the movement disorder coordinator position. Kim’s role as a Movement Disorder Center Coordinator spans across 20 years and three healthcare systems. Her job includes care coordination, patient navigator, community outreach and education, project management and support for patients and families on the journey with Deep Brain Stimulation (DBS). Kim is the one point of contact for patients, staff, physicians and the PD community. Her purpose is to be a resource and connect individuals with the resources needed on the journey living with PD. Kim’s passion is to spotlight diversity and inclusion in the PD community. Knowing that PD is not an exclusive diagnosis, she works to educate underrepresented communities, provide resources and connect them to others who look like them and share their experience. Kim’s goal is to remove barriers, educate patients and families and empower them to live their BEST life.
Made possible by support from Robert W. Woodruff Foundation.
