My PD Story

Colum MacKinnon, PhD Headshot
Researchers

Colum MacKinnon, PhD

2025 Impact Award 

Investigating New Ways to Address Posture Impairment in Parkinson’s 

A common symptom of Parkinson’s disease (PD) is impaired posture. Unfortunately, this symptom is resistant to standard dopamine replacement therapies, and not much is known about the neurological mechanisms that lead to it. Left unchecked, posture impairment can lead to serious falls and other injuries for people with PD. 

Colum MacKinnon, PhD, recipient of a Parkinson’s Foundation Impact Award, suspects that PD affects brainstem neurons responsible for sending posture-related signals to the muscles of the legs and feet. Investigating this potential mechanism behind PD-related posture impairment may contribute to future treatments that could alleviate this debilitating symptom. 

“If successful, this work will be the first to demonstrate that brainstem pathways that control muscle firing properties are altered in people with PD and are associated with postural impairment.” – Dr. MacKinnon 

Dr. MacKinnon, with the help of his coinvestigators Dr. Laura McPherson, PT, DPT, PhD, and Dr. Daniel Free, PhD, will enroll people with and without PD, recording and analyzing their posture and gait (walking manner). He will also use a device to measure muscle activity activity as they point and flex their feet, capturing nerve signals important for balance and posture. 

From this initial data collection, Dr. MacKinnon expects to see reduced postural muscle activity that is controlled by descending brainstem systems in people with PD, and this reduction will correlate with impaired posture and walking ability. 

Next, Dr. MacKinnon will use a noninvasive vagus nerve stimulation device, commonly used to treat migraines and cluster headaches, to stimulate neurons within the brainstem associated with postural control. If his hypothesis is correct, this stimulation will temporarily improve the posture and balance of those with PD as the signals to the ankle muscles are restored. These studies will provide valuable direction for future research and therapeutic development of PD-associated posture impairment, which could significantly improve quality of life for people with PD. 

 “This award provides the unique opportunity to explore the potential contributions of non-dopaminergic pathways to the abnormal muscle activation patterns observed in people with PD, and to conduct exploratory experiments to test the efficacy of using vagus nerve stimulation to upregulate these pathways, improve muscle activation, gait and postural control,” said Dr. MacKinnon. 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers.  

My PD Story

Nuria Vendrell Llopis
Researchers

Nuria Vendrell Llopis, PhD

2025 Impact Award 

Untangling the Importance of Protein Clumping in Parkinson’s Cognitive Symptoms 

Parkinson’s disease (PD) is primarily known for its movement symptoms such as tremors, rigidity and slowness. However, most people with PD also develop other non-movement symptoms, including changes in thinking and memory.

Nuria Vendrell-Llopis, PhD, recipient of a Parkinson’s Foundation Impact Award, is uncovering whether the likely biological cause for PD movement symptoms also contributes to PD-linked thinking impairment. Understanding how movement and non-movement symptoms overlap or diverge could lead to new diagnostic and treatment tools for PD cognitive symptoms.

“Our research aims to investigate how the accumulation of alpha-synuclein, a protein associated with Parkinson’s disease, disrupts the brain circuits that support learning and other cognitive functions.” — Dr. Vendrell-Llopis 

Nuria Vendrell Llopis in lab

In PD, clumps of misfolded alpha-synuclein proteins often accumulate in fragile dopamine-producing neurons in the brain. These clumps, called Lewy bodies, disrupt the function of these neurons and contribute to their breakdown over time. These dopamine neurons are important for movement, so movement symptoms caused by their disruption in PD makes biological sense. 

However, misfolded alpha-synuclein can also form clumps in other neurons in the brain, including those considered to be important for cognition. To date, the association between Lewy bodies and cognitive PD symptoms is not as well understood. Dr. Vendrell-Llopis, from her lab at the University of Alabama at Birmingham, will utilize cutting-edge brain imaging technologies to observe and measure how alpha-synuclein clumps impact learning patterns in mice. She will inject these clumps into neurons within mice, then train those mice to perform a task that uses these specific neurons to receive a reward. 

Some neurons will develop clumps of alpha-synuclein, while others will not. By directly comparing the  activity of neurons with and without alpha-synuclein clumps during this learning task, Dr. Vendrell-Llopis hopes to determine if Lewy bodies are a likely cause of PD-related cognitive symptoms. 

The data collected from these complex studies will allow Dr. Vendrell-Llopis and her team to see which factors, including alpha-synuclein clumping, aging and neuron loss, most affect cognition. She will also perform longer-term studies with these mice, seeing if their learning abilities diminish over time due to progressive alpha-synuclein impacts. 

“The knowledge and tools from this work could make it possible to detect cognitive problems in Parkinson’s disease much earlier, even before standard tests detect any symptoms,” said Dr. Vendrell-Llopis. “Our approach can be used to test new treatments, providing real-time feedback on how therapies impact brain activity and cognitive performance." 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers.   

My PD Story

Versees Headshot
Researchers

Wim Versées, PhD

2025 Impact Award 

Designing Nanobodies that Stabilize Dysfunctional Proteins in Parkinson’s 

The most common genetic risk factor associated with Parkinson’s disease (PD) lies in the GBA1 gene. Research from the Parkinson’s Foundation genetics study, PD GENEration, has found the GBA1 gene is present in 5-10% of people with the disease. GBA1 provides the instructions to make a protein called glucocerebrosidase (GCase), which plays an important role in the waste recycling compartment of the cell, known as lysosomes.  Variants linked to PD produce unstable or less active versions of GCase.  As a result, cells lose part of their cleanup ability, leading to a buildup of harmful proteins such as alpha-synuclein. 

Wim Versées, PhD, recipient of a Parkinson’s Foundation Impact Award, has discovered a set of small proteins called “nanobodies” that attach to and stabilize these fragile forms of GCase, restoring their functionality in cells where they are needed most.  

Most previous research tried to stabilize GCase using small molecule “chaperones”. These compounds could bind and protect the protein but are often attached to the protein’s active site — the very region needed for its normal function, blocking its activity.  The nanobodies, by contrast, stabilize GCase by binding to a previously unexplored site far away from the active site, preserving its natural role.  

Think of mutant GCase as a fragile vase you want delivered safely to your home. One way to protect it during shipping is to fill it with solid material. That will prevent it from breaking, but once it arrives you can no longer use it to hold flowers. This is what happens when molecules bind the active site. Nanobodies, instead, act by binding or wrapping on the outside of the vase. They keep it intact while still allowing it to hold flowers.  

Wim at Work

Supported by the Parkinson’s Foundation Impact Award, Dr. Versées, and his lab at the Flanders Institute for Biotechnology in Belgium, will run a battery of biochemical experiments to hone the design of GCase-stabilizing nanobodies. First, he will use state-of-the-art molecular imaging techniques to see exactly where these nanobodies stick to GCase and how it affects the protein. This information will help Dr. Versées and his team identify which set of nanobodies are the best suited for clinical use and how he can further improve their effectiveness.  

Collaborating with Steven Ballet, PhD, at Vrije Universiteit Brussel, they will also design so-called “peptidomimetics” that are inspired by the nanobodies and have similar GCase-stabilizing features. Since these are much smaller, they can be more easily delivered to the correct cells in the brain, acting as prototypes for future therapeutics. 

Finally, working with Nicoletta Plotegher, PhD, at the University of Padova in Italy, Dr. Versées will test the effectiveness of these nanobodies and peptidomimetics in PD-simulated cells in the lab. Monitoring to what extent the mutant GCase proteins are stabilized and activated with these treatments will validate their potential for future research and their potential as a future treatment. 

Excited by this support, Dr. Versées said “Receiving this award from the Parkinson’s Foundation is both a personal honor and a meaningful endorsement of our research. If successful, this strategy could lead to a new class of molecular chaperones that more effectively target the underlying molecular causes of Parkinson’s, opening new therapeutic avenues for people living with GBA1-associated PD.” 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers

My PD Story

Kelly Stauch Headshot
Researchers

Kelly Stauch, PhD

2025 Impact Award 

Building a Toolkit to Study Early-Onset Parkinson’s Genes in Rat Models 

Genetic variants of the genes PRKN and PINK1 are the most common causes of young-onset Parkinson’s disease (PD). These two genes help create proteins, Parkin and Pink1, that maintain healthy mitochondria, the powerhouses of cells. PD-associated variants of these genes lead to impaired mitochondria maintenance and recycling, contributing to the progressive loss of dopamine-producing neurons in the brain. 

Research into PRKN- and PINK1-associated PD has been difficult since mice—the most common animal model for research—with loss of function genetic variants do not exhibit PD-like disease symptoms. This has made it challenging to evaluate therapeutic treatments for PD cases resulting from genetic variants of these genes.  

Kelly Stauch, PhD, recipient of a Parkinson’s Foundation Impact Award, is building out tools so that researchers can better use rats to study mitochondria health in PD. Unlike mice, rats with loss of function PRKN and PINK1 variants develop PD-like neurodegeneration and symptoms, making them more effective animal models for studying these genes.  

“The tools developed as part of this award will aid my PD research as well as others in the field by providing a method to study cell type-specific mitochondria in non-mice models of PD." – Dr. Stauch 

Stauch in Lab

Working out of the University of Nebraska Medical Center in Omaha, Dr. Stauch will utilize a molecular tag that lets her microscopically visualize mitochondria in rat neurons. Co-created with her collaborator Ian Ganley, PhD, this mitochondria tag will establish new data on how Parkin and Pink1 proteins influence mitochondria health and recycling. 

Dr. Stauch will then use a similar mitochondria tag to measure how Parkin and Pink1 disruption affects the function of mitochondria and their recycling in cells. Mitochondria naturally wear out over time, so the ability to disassemble them and make new mitochondria is essential for cell health. Using these tagging tools and looking at PD-related dopamine neurons in rat brains, Dr. Stauch will expand our biological understanding of Pink1 and Parkin-related PD, contributing to future research and treatment development. 

 “This award will allow me to complete this innovative project, which will enable a new approach for studying mitochondria in nigrostriatal dopaminergic neurons in rat models of PD,” said Dr. Stauch. “Further, the tools developed here could be used in other PD rat models as well as adapted to other non-rodent models in the future.” 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers

My PD Story

Lauren Hammer headshot
Researchers

Lauren Hammer, MD, PhD

2025 Stanley Fahn Junior Faculty Award 

Investigating Which Brain Signals Best Guide Adaptive Deep Brain Stimulation 

Deep brain stimulation (DBS) is a promising treatment option for those with Parkinson’s disease (PD) when medications begin to lose their effectiveness. For DBS, electrodes are implanted into the brain that deliver controlled electrical stimulation that counteracts the PD symptoms. 

Most DBS systems are designed to deliver constant, consistent stimulation based on settings set and updated by physicians during checkups. However, a newer version called adaptive DBS (aDBS), recently approved by the FDA for clinical use, monitors brain signals associated with PD symptoms in real time and adjusts stimulation automatically. This ability to auto-adjust stimulation has the potential to enhance DBS efficiency and minimize side effects, improving quality of life for those that use it. 

Lauren Hammer, MD, PhD, recipient of a Parkinson’s Foundation Stanley Fahn Junior Faculty Award, is working to make aDBS even more effective by determining which types of brain signals offer the best information on how to adjust stimulation in response to symptoms. Current aDBS technology monitors low-frequency brain waves called “beta” signals, but Dr. Hammer believes that higher frequency “entrained-gamma” signals may be better for predicting and controlling PD symptoms. 

 “This research aims to advance deep brain stimulation for Parkinson’s disease by identifying the most effective neural signal to guide adaptive DBS,” said Dr. Hammer. 

From her lab at the University of Pennsylvania, a Parkinson’s Foundation Center of Excellence, Dr. Hammer will first run an in-laboratory assessment where people with PD perform various movement tasks while their brain signals are monitored. This will provide data as to which type of signal — beta or entrained-gamma — offers a more accurate reflection for when PD symptoms like involuntary movements are occurring. 

Dr. Hammer will then take a small group of people with DBS for their PD and upgrade them to aDBS for an at-home study. After participants are programmed for aDBS stimulation using both beta signals and entrained-gamma signals, they will switch weekly between these settings, recording how well their symptoms are controlled at home.   

At the end of the trial, Dr. Hammer and her team will have data to suggest which signal type guided the best aDBS experience for different types of people with PD.  

When asked what this support means to her and her research goals, Dr. Hammer said “Receiving this award is an incredible honor and an important milestone in my journey to improve the lives of people with Parkinson’s disease. This research could support expanding the set of neural signals used for clinical aDBS, enabling more effective and personalized treatment.” 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers

My PD Story

Jared Cregg Headshot
Researchers

Jared Cregg, PhD

2025 Stanley Fahn Junior Faculty Award 

Branching Out Toward New Parkinson’s Therapies by Studying the Brainstem 

In Parkinson’s disease (PD), specific dopamine-producing neurons in the brain degenerate over time and lead to progressive movement and cognitive symptoms. A multitude of therapeutic research has focused on the impact of losing these neurons on connections within the brain, which has helped develop treatments like dopamine replacement therapy (DRT) and deep brain stimulation (DBS).  

While generally effective, these therapies have their limitations and side effects, prompting investigation into alternative treatment strategies. Jared Cregg, PhD, recipient of a Parkinson’s Foundation Stanley Fahn Junior Faculty Award, is exploring how modulating a different area of the brain, the brainstem, could provide new therapeutic potential for those with PD. 

The loss of dopamine in PD rewires the circuitry of the brain in several regions critical for movement. Many of these brain areas are highly “plastic,” meaning that they are prone to being rewired, particularly in a disease like PD. However, the circuits within the brainstem produce stable, reflexive motor actions, and Dr. Cregg hopes to leverage the stability of these connections to help restore movement to people with PD.  

“This work aims to establish a new framework for treating movement impairments in Parkinson’s disease by shifting focus from traditional targets to the brainstem circuits that naturally govern locomotion.” – Dr. Cregg

Jared Craig Lab.

From his lab at the University of Wisconsin – Madison, where he is an assistant professor of neuroscience and neurology, Dr. Cregg will first create a biochemical map of two brainstem regions known as the pedunculopontine nucleus (PPN), which regulates movement speed, and the rostral pontine reticular formation (PnO), which regulates turning. This map will then help him to develop tools to selectively target specific neurons in those regions that control these movements in mice.  

These tools will enable Dr. Cregg to stimulate these neurons at will. By testing these tools in mice that have Parkinson’s-like symptoms, he can see the potential effects of future therapies that target the brainstem in a similar way. The scientific knowledge gained from these experiments will guide future brainstem-centered PD treatments. 

When asked about what this support means to him and his work, Dr. Cregg said “Receiving this award is an incredible honor and a meaningful endorsement of our efforts to chart a new path in Parkinson’s research. By refining these brainstem-based therapies, this work could pave the way for more stable, long-lasting interventions that improve movement in people with PD.” 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers.

My PD Story

Jacob Simmering Headshot
Researchers

Jacob Simmering, PhD

2025 Stanley Fahn Junior Faculty Award 

Scanning Healthcare Data to Improve Earlier Detection and Diagnosis of PD 

Parkinson’s disease (PD) can be difficult to diagnose by clinicians, especially in early stages of the disease. This means that some people with PD may get diagnoses only late in the disease when the symptoms are more obvious. Others may never get a formal diagnosis at all. 

Jacob Simmering, PhD, recipient of a Parkinson’s Foundation Stanley Fahn Junior Faculty Award, is digging through healthcare data to find clues that could lead to earlier and more accurate diagnoses of PD. Using statistical analysis, he hopes to identify diagnostic patterns that commonly precede PD and that could be used as future medical signposts, guiding doctors toward earlier detection of the disease. 

“This research will enable us to improve the timeliness of detection and diagnosis of Parkinson's disease.” – Dr. Simmering 

Jacob Simmering Lab

From his lab at the University of Iowa, a Parkinson’s Foundation Center of Excellence, Dr. Simmering is utilizing health insurance databases to collect healthcare data on nearly 250,000 deidentified people recently diagnosed with PD. From this information, he hopes to identify a “diagnostic window” for PD—a stretch of time with repeated doctor’s visits for PD-like symptoms signaling the presence of the disease. 

Dr. Simmering will then use this diagnostic window as a frame, looking at people with recent diagnoses and figuring out what prevented physicians from diagnosing PD sooner. His hypothesis is that the three biggest factors that play into delayed diagnoses are: 

  • Unique symptom patterns of PD 

  • Living in more rural areas 

  • Not being seen by a neurologist 

Sorting through this data will provide evidence for other repeated symptoms that could clue doctors into a PD diagnosis earlier. While tremor and involuntary movements are most commonly used to lead to a PD diagnosis, other symptoms like urinary problems and anxiety could be just as valuable. Altogether, Dr. Simmering will use this detailed analysis to generate a forward-looking “risk score” to identify people who are most at risk of developing PD.  

“These results will allow us to screen for people who have symptoms and characteristics similar to people who will go on to be diagnosed with Parkinson's disease, potentially allowing for earlier detection of disease,” said Dr. Simmering.  

Earlier detection means providing symptom relief sooner to those with the disease, improving their quality of life with early treatment. 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers

Advancing Research

Parkinson’s Foundation Shares Six Scientific Posters at International Congress of Parkinson’s Disease and Movement Disorders

Group of neurologists

Every year, thousands of neurologists, researchers and other Parkinson’s disease (PD) experts gather at the International Congress of Parkinson’s Disease and Movement Disorders to share new ideas and breakthroughs aimed at transforming life for people with Parkinson’s. This year the conference took place October 5 in Honolulu, HI.  

SEE ALL POSTERS

1. Returning Secondary Health Findings in the PD GENEration Study 

PD GENEration: Powered by the Parkinson’s Foundation is a global research study providing genetic testing and counseling at no cost to people with Parkinson’s. Since 2019, the study has expanded to nearly 70 sites in the U.S. and internationally, enrolling more than 27,000 participants. PD GENEration also recently expanded its testing platform to provide secondary health findings to participants.  

Using whole genome sequencing that looks at a person’s entire DNA, PD GENEration can now disclose 21 genes linked to either PD or parkinsonism and 10 non-PD related genes. 

Key Takeaways 

  • As of February 2025, 96% of study participants with whole genome sequencing consented to receive secondary health findings. 

  • Gene-specific counseling materials were created to share this additional genetic health information with participants. A system was also established to review genes of secondary health findings as new research emerges. 

  • Future studies will help researchers better understand how people feel after receiving these results. 

Learn more & enroll in PD GENEration. 

2. Engagement of PD GENEration Participants: Insights into Genetic Counseling Recall and Clinical Trial Interest 

Previously, data for PD GENEration was only collected from participants at enrollment — this limited long-term insights. The Parkinson’s Foundation followed up with participants to better understand their PD GENEration experience and whether their views on joining the clinical research trial changed over time. 

Key Takeaways 

  • While most respondents remembered their PD GENEration experience and many were interested in learning more about future clinical trials, nearly 30% either did not recall receiving genetic counseling or receiving their genetic test report. 

  • People who had a negative test result or a longer enrollment period were slightly more likely to misremember their PD GENEration experience. Men were also slightly more likely to misremember than women. 

  • The results emphasize the importance of developing methods for ongoing engagement and information sharing. 

Discover how to join a research study. 

3. Distribution of Genomic Ancestries and Genetic Variation Among Individuals Enrolled in the PD GENEration Study 

Analyzing genetic ancestry is important in large Parkinson’s genetic studies to accurately measure PD risk in different populations. This study looked at the genetic backgrounds of people in the PD GENEration study and how often certain genetic results were found.  

As of August 2025, next-generation genetic sequencing — which allows for comprehensive analysis of genetic variations — was completed for 22,189 people with Parkinson’s. Of those tested, about 12% were found to have a genetic change linked to the disease. Most of those tested have European genetic ancestry, and more than 9% are of Ashkenazi Jewish genetic ancestry.  

Key Takeaways 

  • There were differences between what participants reported as their race, ethnicity and ancestry and what the genetic test results showed. 

  • The study also showed that the likelihood of having specific Parkinson’s-related genes varies depending on a person’s genetic ancestry.   

  • The high number of people with European ancestry in PD GENEration is driving efforts to recruit participants from diverse ancestries to better understand how genes affect disease risk. 

Explore current findings from PD GENEration. 

4. The Role of Research and Genetics Educational Events in Parkinson’s Research: Overcoming Barriers in the Hispanic/Latino Community 

Diversity in Parkinson’s research is key to understanding the disease and discovering new treatments. Hispanic and Latino members of the Parkinson’s community remain underrepresented in genetics research due to barriers such as language differences, lack of information and unequal access to healthcare.  

A 2024 strategic collaboration between the Parkinson’s Foundation and the Latin American Research Consortium on the Genetics of Parkinson’s Disease (LARGE-PD) expanded PD GENEration genetic testing and counseling across Latin America to increase Hispanic and Latino participation in genetic research. 

Educational outreach events in Mexico City, Mexico and Cali, Colombia staffed by local doctor and nurse volunteers combined on-site participant recruitment with information on research, genetics and broader community topics. These events included tailored Spanish-language materials. 

Key Takeaways 

  • Sustained, community-driven efforts are key to addressing participation gaps among medically underrepresented communities.  

  • Research and genetics educational events, along with culturally adapted recruitment strategies, can reduce barriers, raise awareness and boost Hispanic and Latino participation in Parkinson’s genetic research. 

  • The share of Hispanic and Latino PD GENEration participants rose sharply in September 2024, reaching a peak of more than 35%, reflecting recruitment efforts.  

Learn more about our commitment to making research more inclusive. 

5. Online Learning Preferences of Healthcare Providers Caring for People with Parkinson’s  

Many health professionals are required to continue their education to stay current with evolving knowledge and research. This learning can often be done online. However, information on how healthcare professionals caring for people with Parkinson’s prefer to learn online is limited. This study aimed to identify continuing education learning preferences and barriers to course participation and completion across nearly 5,000 healthcare professionals caring for people with PD.  

Key Takeaways 

  • Participants preferred live and recorded webinars as well as interactive and hands-on learning experiences that are directly relevant to their healthcare roles.  

  • This study showed time and financial constraints can be barriers to continuing education. Course workload and media playback speed can also be factors that can affect completion rates.  

  • The Parkinson’s Foundation will use these results to inform the development of future online continuing education for healthcare professionals. 

Explore our Learning Lab courses, designed for healthcare professionals.   

6. Parkinson’s Exercise Guidelines: From Outdated to Updated 

Exercise and movement can improve many Parkinson's symptoms. The Parkinson’s Foundation, in collaboration with the American College of Sports Medicine, created Parkinson’s exercise recommendations in 2021 to help people with PD receive safe and effective exercise. Clinical guidelines are typically reviewed and updated every three to five years to ensure they reflect the latest, high-quality, evidence-based care. The Parkinson’s Foundation conducted research to identify any gaps in literature and used its findings to revise professional-facing exercise recommendation guidelines. A panel of international subject matter experts and people with Parkinson’s reviewed the revisions. Their feedback, along with information collected during a public comment period, was used to further improve the guidelines. 

Key Takeaways 

  • The panel agreed recommendations should highlight the importance of exercise safety, a referral to a physical therapist and exercise modifications based on the ability of the person with Parkinson’s, their medication status and their stage of PD. 

  • The guidelines were updated to reflect input from the panel, the public and the latest evidence and best practices. 

  • The Parkinson’s Foundation turned the guidelines into a practical, user-friendly guide for exercise professionals who work with people with Parkinson’s. 

Read and download our Parkinson's Exercise Recommendations fact sheet. 

SEE ALL POSTERS 

Find more about the Foundation’s commitment to research at Parkinson.org/Research. 

Advancing Research

Meet a Researcher Aiming to Improve Early Detection and Diagnosis of PD 

Meet the Researcher Simmering

Parkinson’s disease (PD) can be difficult to diagnose by clinicians, especially in early stages of the disease. This means that some people with PD may get diagnoses only late in the disease when the symptoms are more obvious. Others may never get a formal diagnosis at all. 

Jacob Simmering, PhD, recipient of a Parkinson’s Foundation Stanley Fahn Junior Faculty Award, is digging through healthcare data to find clues that could lead to earlier and more accurate diagnoses of PD. Using statistical analysis, he hopes to identify diagnostic patterns that commonly precede PD and that could be used as future medical signposts, guiding doctors toward earlier detection of the disease. 

“This award is crucial to my career development as a researcher in Parkinson’s disease,” said Dr. Simmering. “Parkinson’s disease is a common neurodegenerative disease without any disease-modifying, neuroprotective therapies. One issue with degenerative diseases is that the damage is irreversible. By the time clinical symptoms become apparent, the disease is often very advanced in terms of neuronal death. Earlier intervention may allow for treatments that preserve neurons — slowing, if not preventing, progression.” 

Simmering Lab

From his lab at the University of Iowa, a Parkinson’s Foundation Center of Excellence, Dr. Simmering is utilizing health insurance databases to collect healthcare data on nearly 250,000 deidentified people recently diagnosed with PD. From this information, he hopes to identify a “diagnostic window” for PD—a stretch of time with repeated doctor’s visits for PD-like symptoms signaling the presence of the disease. 

Dr. Simmering will then use this diagnostic window as a frame, looking at people with recent diagnoses and figuring out what prevented physicians from diagnosing PD sooner. His hypothesis is that the three biggest factors that play into delayed diagnoses are: 

  • Unique symptom patterns of PD 

  • Living in more rural areas 

  • Not being seen by a neurologist 

Sorting through this data will provide evidence for other repeated symptoms that could clue doctors into a PD diagnosis earlier. While tremor and involuntary movements are most commonly used to lead to a PD diagnosis, other symptoms like urinary problems and anxiety could be just as valuable. Altogether, Dr. Simmering will use this detailed analysis to generate a forward-looking “risk score” to identify people who are most at risk of developing PD.  

“These results will allow us to screen for people who have symptoms and characteristics similar to people who will go on to be diagnosed with Parkinson's disease, potentially allowing for earlier detection of disease,” said Dr. Simmering.  

Earlier detection means providing symptom relief sooner to those with the disease, improving their quality of life with early treatment. 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers

Raise Awareness

Mi Historia con EP - Adriana Jiménez

Adriana Jiménez y sus padres

Mi nombre es Adriana Jiménez. Mi papá fue diagnosticado hace más de 10 años con la enfermedad de Parkinson y en ese momento empezó nuestra aventura con esta condición, ya que yo no sabía lo que significaba.  

Mis papás están en la ciudad de Guadalajara y yo vivo en los Ángeles, Ca., y estar a distancia fue un reto bastante grande. Gracias a Dios, tuve la oportunidad de ir a verlos y ver que no había nada de información del Parkinson en Guadalajara. Cuando regresé a California, empecé a buscar información de lo que es esta enfermedad.  

Al principio, no encontraba nada en español y logré contactarme con la Parkinson’s Foundation que, dándose cuenta de la gran necesidad de información en español que se requiere, ha tomado el liderazgo en crear documentos informativos.  

En el 2018, pude asistir a la primera conferencia en español de la Parkinson’s Foundation en Long Beach, Ca., donde pude entender qué es esta condición, cuáles son las diferentes terapias y cómo hablar con mis papás y familiares para que pudieran entenderlo. ¡Ser un cuidador a distancia no es fácil! Sin embargo, tampoco la distancia es un impedimento para poder estar cerca de nuestra familia y apoyarla. ¡Buscar la información e instruirnos marca una gran diferencia!  

Mi mamá fue diagnosticada también con Parkinson hace 4 años y la forma en que entendimos y la ayudamos fue diferente que a mi papá. Ya tenía más información. Pude explicarle lo importante de saber que cada persona con Parkinson es diferente y que, a pesar de estar lejos, siempre estoy con ellos, llevándoles nuevas clases en línea que encuentro en la Parkinson’s Foundation, contactando a mi mamá con doctores, creando grupos de apoyo, uniéndome con otras personas que están en la misma situación que la mía, con quienes compartimos las mismas preguntas e inquietudes.  

Soy fiel creyente en que la unión hace la fuerza y ahí decidí crear el programa de Parkinson con Give for a Smile, donde encontré también doctores y especialistas hispanos, como yo, aquí en los Estados Unidos, que tienen un gran amor a nuestras familias latinas, a nuestras familias con Parkinson; porque siempre digo: no es una persona con Parkinson; ¡es una familia con Parkinson!  

Con esta enfermedad, toda la dinámica cambia; pero si lo entendemos, lo procesamos y nos unimos, podemos marcar la diferencia en nosotros, en nuestra familia y en nuestra comunidad.  

Si me preguntara, ¿qué me hace feliz en esta aventura del Parkinson? Puedo decir tranquilamente que saber que, aun a la distancia, puedo estar cerca de mis papás, ayudándolos con información, clases por Zoom, conferencias y a saber que tener Parkinson no es el final del camino; es el principio de una nueva aventura; que mi familia ha crecido, porque la familia del Parkinson me abraza y me apoya siempre. ¡Lo único que tengo que hacer es unirme a ella! 

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