My PD Story

Ian Rodriguez posing with boxing gloves on
People with PD

Ian Rodriguez

I remember seeing my first tremor in my right hand at the age of 10, and my gait felt different. I always wanted to understand what was happening in my body. 

I was diagnosed in 2002 at the young age of 25. Today I'm 48. I've been battling Parkinson's disease (PD) for 23 years.

I’ve lived with Parkinson for many years, but I never stopped looking for answers.

Ever since being diagnosed I wanted to know more and more information about my Parkinson’s. This is me. I found the Parkinson's Foundation because it has a lot of information, and many resources. From providing solutions to having a lot of information and always being available on Parkinson.org

I found out the Foundation was doing a genetics study on TV. So we found PD GENEration: Powered by the Parkinson’s Foundation online and signed up to participate. When I learned the Foundation was running this study, I knew I wanted to be part of it. I was motivated to participate simply because I wanted to learn more about my Parkinson’s. Participating was a chance to better understand my own story.

PD GENEration: Powered by the Parkinson’s Foundation is a global research study that provides genetic testing and genetic counseling at no cost for people diagnosed with Parkinson’s.

My PD GENEration experience was very, very easy. No problems at all. I filled out my name and the form online, and then the Parkinson’s Foundation sent me the at-home test kit a week later.

After receiving my results, I found the genetic counseling session to be very interesting and validating. I always thought the reason I had Parkinson's disease was environmental, because my parents worked as farmers in the 1970s. I always thought we were exposed to chemicals linked to PD. 

The results surprised me. When I learned I carried genetic variants related to PD, I was shocked. I never imagined I was carrying this information with me since childhood. 

Having real answers has changed my perspective about Parkinson’s disease. PD GENEration opened a door to knowledge I never had before.

The surprise was that out of the seven main PD-related genes they tested for, I tested positive for two. So basically, the geneticist explained to me that I carry two Parkinson’s genes, and that left me thinking “Wow!”

It feels good to know new information when it comes to my Parkinson’s. I now have valid documentation that proves that I am genetically linked to Parkinson's.

For anyone living with Parkinson’s, I highly recommend participating in PD GENEration. Why not learn more about yourself? About your Parkinson’s? 

Ian standing by an exercise machine

I think this study is especially valuable for the PD community because in our Hispanic culture, Parkinson’s research doesn’t always reach us or reflect us. Too often, a diagnosis is where the PD journey stops for many. A doctor tells you it’s Parkinson’s and we don’t do anything else. 

As Hispanics, we need to take part in studies like this. Our community deserves access to information and opportunities like PD GENEration. Participating in research is raising the Hispanic voice in research.

PD GENEration was a good experience for me. I received good news — the answers to the questions I wanted to know about my Parkinson’s.  

Participating in this study had an impact on my family. I have two daughters, and now I'm thinking about their future. Participating wasn’t just for me; it was for my family. I feel that participating in research like this today opens doors for future generations. 

Research is hope.

Read Ian’s story in Spanish

Testimonials provided by trial participants are personal experiences and do not necessarily represent the views of the trial sponsor. They are not a substitute for medical advice, and the results of the trial may vary based on individual circumstances. Always consult with your healthcare provider before making any medical decisions.

By joining PD GENEration study, participants can discover new knowledge about their genetics, understand their family’s risks and help benefit generations to come. Learn more and enroll today.

Advancing Research

Meet the Researcher Investigating How Parkinson’s Disrupts Mitochondria in Neurons

🧠 What will you learn in this article?

This article highlights a researcher studying how Parkinson’s disease (PD) causes neurons to degenerate. It discusses: 

  • The research of Inés Patop, PhD, a Parkinson’s Foundation Postdoctoral Fellow.

  • What neurons are and what we currently know about their degeneration in PD.

  • How this research could lead to future therapies.

  • How support from the Parkinson’s Foundation makes research like this possible.

Inés Patop in a lab

Neurons, the cells that carry information in our brain and nervous system, have puzzled researchers for decades. Depending on their location and role in the body, neurons can vary wildly in shape and activity, with some stretching up to three feet long. Their size and structure also create challenges for neurons to stay healthy and functional. 

The dopamine-producing neurons in the brain progressively lost in Parkinson’s disease (PD) are no exception. How the disease may impact the cells’ critical maintenance is still not well understood.

Inés Patop, PhD, recipient of a Parkinson’s Foundation Postdoctoral Fellowship, is using new biological tools to improve our understanding of not just how PD may affect neuronal upkeep, but specifically where it is most damaging within the cell and how we can use that knowledge to design more efficient therapies.  

“There are certain cells in the brain that deteriorate with time,” said Dr. Patop. “These cells have certain vulnerabilities that make them more sensitive to Parkinson’s disease. My work studies these vulnerabilities and why these cells degenerate, with a focus on mitochondria, the powerhouse of the cell that becomes defective in Parkinson’s and how we can find new therapies to avoid the degeneration of these neurons.”

Parkinson’s disease has been associated with mitochondria misfunction for more than 30 years, and several PD-associated genetic mutations are involved in the process of clearing defective mitochondria. 

The challenge is that the blueprints needed to maintain, repair and remove damaged mitochondria come from the nucleus in the soma. To maintain the mitochondria in the neurites (see box), the neuron needs to print and transport those blueprints (called RNA) across the cell. That process requires coordination, which is likely disrupted in neurons affected by PD-associated mutations.  

Neurons have two main parts:

  1. The soma: the main area of the cell that contains the nucleus, where DNA is stored. 
  2. The neurites: branch-like extensions that reach other cells to either receive signals (dendrites) or send signals (axons).  

These areas contain mitochondria, tiny cell powerplants that require routine maintenance to keep the cell working.

Think of individual mitochondria as power plants located in different parts of a large city. Each power plant operates on its own but needs to receive materials to function; if the materials don’t arrive, there are failures. Therefore, power plants that are far away from the distribution center (the cell’s soma) are more prone to failure.

The process of generating the necessary materials for a power plant to function, by combining its own materials with materials from the distribution center (the soma’s nucleus), is called "mito-nuclear balance.” When this balance is disrupted, cellular stress occurs. Parkinson’s disease is associated with the failure of various processes that ensure correct mito-nuclear balance.

From the lab of Dr. Stirling Churchman at Harvard University in Boston, MA, Dr. Patop:

  • Utilizes special growing chambers that will allow them to isolate and study the soma and neurites of neurons individually. 

  • Then run complex biochemical tests to see how RNA printing and transport, mitochondria repair and more differ between the distinct cell regions, and how each is affected by PD mutations. 

From this data, Dr. Patop hopes to better understand how PD may affect neurons differently from soma to dendrites, potentially leading to new future treatments that target the most impacted regions of the cells.

“My work focuses on understanding basic biology about the neurons that degenerate in Parkinson’s,” said Dr. Patop. “Through this research, we expect to identify new regulatory mechanisms implicated in PD, potentially identifying novel drug targets for treatment.”

“The impact of this research could significantly advance our understanding of PD and pave the way for innovative therapeutic strategies.” - Dr. Patop

Dr. Patop said this award has not only help fund their research but has connected them with a community of scientists who are also focused on Parkinson’s disease, as well as people with PD and their families, which has been very impactful. They are grateful to the Parkinson’s Foundation for investing in basic research. 

“Without basic research like this, new treatments would not be possible” said Dr. Patop. “I think we are just at the moment where things are coming through, so if we continue on this path and support this type of research, we are going to see really great advances in the prognosis of Parkinson’s disease.”

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

Educational Events

The Role of Imaging in Parkinson’s Disease

1:00 pm to 3:00 pm EST
FREE
Imaging Banner MI

Check-in is at 12:30 pm and program starts at 1:00 pm. 

Join us for a clear, practical conversation about brain imaging and Parkinson’s disease. This program will explain what different imaging tests can and can’t show, why your care team might order a scan, and what you can expect. We will also talk about when scans are necessary for diagnosis and treatment planning versus when they are not, address common questions about tests and results, and share emerging imaging technologies that may shape future PD management.

Speaker: 
Dr. Roger Albin, University of Michigan

There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends and the community.

This program is hosted Michigan Medicine in partnership with the Parkinson’s Foundation Great Lakes Chapter.

University of Michigan Logo

Upcoming Events

Educational Events

Thinking & Memory Changes

Many people with Parkinson's disease experience thinking changes such as trouble focusing, multitasking, or finding the right words. Learn more about these changes as well as tips to help with daily tasks, treatment options and resources for emotional and social support.

Livonia, MI
Educational Events

Living with Parkinson's Symposium 2026: Myrtle Beach, SC

Virtual ( Zoom )
10:00 am to 2:00 pm EST
FREE
Carolinas Chapter Symposium

Join us for the Living with Parkinson's Symposium 2026. Hear about current and upcoming treatments, ongoing research and the resources available in your community and beyond to help you live your best life with Parkinson's. Join us in person or online (via Zoom).

Hosted by the Parkinson's Foundation Carolinas Chapter and the Medical University of South Carolina—a Parkinson's Foundation Center of Excellence.

Event Overview

9:00 a.m. ET - In-person check-in begins
10:00 a.m. ET - Event begins
2:00 p.m. ET - Event ends

Speakers

TBA


There is no charge to attend, but registration is required. The program is open to people with Parkinson's, their family, friends, and the community.


Sponsor

Acadia2025

Upcoming Events

Educational Events

Thinking & Memory Changes

Many people with Parkinson's disease experience thinking changes such as trouble focusing, multitasking, or finding the right words. Learn more about these changes as well as tips to help with daily tasks, treatment options and resources for emotional and social support.

Livonia, MI
Educational Events

Veterans and Parkinson's: Breakfast and Q&A in St. Louis MO

10:00 am to 11:30 am CDT
FREE
Veterans Banner 2025

Join us for Coffee & Conversation with a Parkinson's Expert Panel from Veterans Affairs—a free, informative, and welcoming session. This is a great opportunity to ask questions about Parkinson’s and gain valuable insights from professionals who understand the unique needs of veterans.

Learn about:

  • Available resources and support services
  • Specialized care options for veterans
  • Practical guidance for navigating life with Parkinson’s

Whether you are living with Parkinson’s or supporting someone who is, come enjoy coffee, connect with others, and get the answers you need in a supportive environment. We hope you can join us for this meaningful conversation!

Time: 10 am: Check-in and light breakfast
10:15 to 11:15 am:  Q&A with expert panel from the VA
11:15 to 11:30 am: Movement break

Parking: Complimentary parking is available in the parking garage and outside surface lot. Convenient drop-off is available at the west entrance. For driving directions, please click here.

There is no charge to attend, but registration is required as a light breakfast is provided. This program is open to veterans with Parkinson's and their families.

After the Veterans Breakfast, please stay for the free Parkinson’s Resource Fair and educational afternoon program, Living with Parkinson’s: Managing Changing Symptoms from 12 to 4 pm. Stop by the VA’s table in the Resource Fair to get your questions answered.

Learn More & Register: Parkinson.org/STL (Registration required.)

Upcoming Events

Educational Events

Thinking & Memory Changes

Many people with Parkinson's disease experience thinking changes such as trouble focusing, multitasking, or finding the right words. Learn more about these changes as well as tips to help with daily tasks, treatment options and resources for emotional and social support.

Livonia, MI

My PD Story

Marjorie Webb
People with PD

Marjorie Webb

Hi, my name is Marjorie Webb. My Parkinson's story began a few months before the "COVID shut down" in 2020. Toward the end of 2019, I began having several unusual symptoms —I fell several times and just didn't quite feel like myself. 

I went to my primary care doctor who immediately began testing. Some of my tests were delayed due to the challenges of trying to schedule them during a global pandemic. Even our large academic medical center was operating on reduced capacity for non-emergent conditions. Many tests later my diagnosis was neurological, but not certain what it was. My Neurologist worked diligently to try to help me with my early symptoms

Fast forward to spring of 2024. Something crazy but very telling happened. My gait started freezing. This would happen at the top of the stairs or when I moved from room to room. I was then sent to a Movement Disorders Specialist at The University of Alabama at Birmingham and received a diagnosis of Parkinson's disease (PD) in the summer of 2024. 

I began Sinemet and Entacapone was added later. These medications helped immensely however, I still had a great deal of "off time" — which is when the effects of Parkinson’s medication dosages may not last as long, leading to "off" periods, when symptoms return between doses. During the summer of 2025 I was approved to receive the Vyalev pump from Abbvie. It has been a game changer. 

Additionally, I was very motivated to participate in the PD GENEration genetics study. I wanted to know more about my Parkinson's and perhaps be able to inform my children of any known genetic ties to PD. It was very informative and continues to be. 

After receiving my PD GENEration information, I actively look for research studies. I think that participation in research is essential.

I am back to my old self most days. I now have less "off time" and sleep so much better. I currently participate in any Parkinson's research I am eligible for. I believe that research is what leads to better treatment like the Vyalev, and eventually a cure.

The only way we will find a cure for Parkinson’s is through research. Explore the different opportunities to get involved with Parkinson’s research today.

My PD Story

Chris Anthony and his wife
People with PD

Chris Anthony

In 2025, I was diagnosed with Parkinson’s disease (PD).

Like many people, I did not arrive at that diagnosis in one clean, dramatic moment. Looking back, I can see signs that were probably there earlier — changes I explained away as age, stress, old injuries or just the normal wear and tear of life.

I spent 24 years in the United States Air Force, retiring as a Senior Master Sergeant, and then continued serving in federal government and consulting roles. I was used to solving problems, pushing through challenges and figuring things out. Parkinson’s, however, was not something I could simply outwork.

At first, I had more questions than answers. What did this mean? How fast would it progress? What should I be doing now? How would this affect my family, my future and the way I saw myself?

One of the first challenges was accepting that Parkinson’s is not just a diagnosis you receive and file away. It becomes part of daily life — medication schedules, exercise, therapy appointments, changing symptoms, fatigue and the uncertainty of what comes next. Some days the challenge is physical. Other days, it is mental: learning not to measure today’s life only against what I used to be able to do.

There was also a more personal reason I wanted to understand Parkinson’s better. My dad had Parkinson’s, too. He was diagnosed later in life, in his 70s, around 2005. At the time, I did not have the resources or understanding I have now. His primary doctor largely explained it away as an old man’s disease that made old men shake, and Dad rarely saw a neurologist.

Looking back, I wish I had known then what I know now. Parkinson’s is a complex neurological disease — not just a tremor, not just something that happens to older people, and not something families should have to figure out on their own.

That is one reason the Parkinson’s Foundation matters to me.

After my diagnosis, I began looking for reliable information. The internet is full of opinions, personal stories, miracle claims and self-proclaimed experts. Some lived experience is valuable — I share my own story, too — but I wanted information grounded in science, education and real expertise.

The Parkinson’s Foundation became one of the places I turned to for trusted resources. Its website, Parkinson.org, has helped me better understand symptoms, treatment options, exercise, care partner issues and the importance of building a knowledgeable care team. 

I also receive care through the Norman Fixel Institute for Neurological Diseases at the University of Florida, a Parkinson’s Foundation Center of Excellence. Thankfully, because of advances in care and organizations like the Parkinson’s Foundation, I am in a much different place than my dad was when he was diagnosed.

My involvement with the Parkinson’s Foundation Community Network has also given me a way to turn my diagnosis into something useful. As a Parkinson’s Foundation Ambassador, I have had opportunities to help raise awareness, share resources, attend community events and connect with people living with Parkinson’s and those who care about them.

Chris Anthony and his wife in Cozumel, Mexico

That work matters to me because people with Parkinson’s and their families already know this disease is real. The larger challenge is helping the broader public understand why Parkinson’s deserves more attention, more research, more support and more voices speaking up.

What keeps me happy, healthy and hopeful is a mix of things: my family, exercise, faith, humor, good medical care and the chance to keep serving in a different way. Through the Parkinson’s Foundation, I also learned about Rock Steady Boxing, an exercise program designed for people with Parkinson’s. Participating in Rock Steady Boxing has helped me stay active, challenged and connected to others who understand the importance of movement.

Parkinson’s has changed my life, but it has also given me a clearer sense of purpose. I cannot control everything about this disease, but I can control how I respond to it. I can keep learning. I can keep moving. I can keep showing up.

I have also started sharing my Parkinson’s journey through writing and advocacy. My platform is called From Where I Sit, because I believe perspective is shaped by where we are now and where we have been. From where I sit, Parkinson’s is not just a diagnosis. It is a daily lesson in adaptation, humility, purpose and continuing to move forward.

What advice would I give someone newly diagnosed?

  1. Do not go through this alone. Find credible information. Build a care team you trust. Connect with others who understand the road you are on.

  2. Exercise. Not someday. Now. Movement is one of the most important things we can do for ourselves.

  3. Give yourself some grace. Parkinson’s changes things, but it does not erase who you are.

Parkinson’s may have changed where I sit, but it has not changed the fact that I am still here — still learning, still serving, still speaking up and still trying to make the road a little easier for the next person who hears the words, “You have Parkinson’s disease.”

Join one of our five Parkinson’s Foundation Community Networks and learn how you can volunteer

Books

Practical Pointers Guide

This guide focuses on everyday activities such as dressing, bathing, eating and sleeping. It offers practical ideas for adapting daily routines as Parkinson’s symptoms change. 

This guide can help you: 

  • Find new ways to approach everyday activities 
  • Learn about tools and aids that may help with daily tasks 
  • Make your home safer and more comfortable 
  • Explore support from professionals, family and community 
  • Learn practical ways to support daily routines if you are a care partner 

Explore topics by chapter

Choose a topic below to find practical tips, helpful strategies and everyday support for living with Parkinson’s.

How to Use This Guide & Building Your Support Team
Everyday Movement
Getting Dressed
Personal Care
Mealtimes & Swallowing
Sleep & Moving in Bed
Thinking Changes & Daily Life

Raise Awareness

10 Years of Progress: Top Parkinson’s Foundation Accomplishments

🧠 What will you learn in this article?

  • In 2016, two organizations — the National Parkinson Foundation (NPF) and the Parkinson’s Disease Foundation (PDF) — merged to form the Parkinson’s Foundation. 

  • The Parkinson’s Foundation has expanded access to care, advanced research and delivered consistent, much-needed resources and support. 

  • The organization’s growth (annual revenue rising from $22 million to $80+ million) has fueled major investments in research, resources and programs for the Parkinson’s community. 

  • Landmark initiatives include PD GENEration and large-scale community support through hundreds of health and wellness programs and grants nationwide. 

10 years of the Parkinson's Foundation

On July 7, 2016, two leading Parkinson’s organizations — the National Parkinson Foundation (NPF) and the Parkinson’s Disease Foundation (PDF), both founded in 1957 — united to form the Parkinson’s Foundation. Together, they built on nearly 60 years of shared commitment to people living with Parkinson’s disease (PD).

Through 10 years of progress the Parkinson’s Foundation has transformed lives by raising the standard of PD care, advancing groundbreaking research and empowering people with PD and their families at every stage of the journey. Today, with offices in New York City, Miami and Washington, D.C., the growing non-profit continues to drive progress toward better treatments — and ultimately, a cure.

“While we’re excited for the work ahead, our first 10 years as the Parkinson’s Foundation have shown what is possible through collaboration, innovation and the unwavering dedication of our community. I am excited and hopeful that, through our evolving research and care initiatives, the next 10 years will bring transformative breakthroughs.” 

— John Lehr, Parkinson’s Foundation President and Chief Executive Officer

Here are some of the major milestones we’ve achieved in the last 10 years: 

Parkinson's Awareness Month 2017

1. Increased annual revenue from $22 million to more than $80 million.

This amazing growth reflects the rising impact of Parkinson’s disease and the generosity of a growing community determined to make an impact. Increased funding has allowed us to expand groundbreaking research, improve care initiatives, raise awareness and launch innovative educational resources and programs designed to meet the evolving needs of the PD community. 

2. Launched a first-of-its-kind international genetics study. 

In 2019, we launched PD GENEration: Powered by the Parkinson’s Foundation. Since then, the genetics study has empowered participants with genetic insights that can help them understand their disease better while accelerating clinical trial development for new treatments. 

In just six years, PD GENEration has: 

PD GENEration event
  • Enrolled more than 35,000 participants around the world, providing genetic testing and counseling at no cost.
  • Designed and introduced an at-home genetic test to reach people in rural areas.
  • Hosted international educational events focused on Parkinson’s and genetics.
  • Shared study findings with the global research community to accelerate scientific discovery.  

Learn More & Enroll

3. Invested millions in research grants to fuel scientific discovery.

At a time when federal funding for disease research is being challenged, we have accelerated research funding over the last decade, investing more than $180 million in research for a total investment of $513.5 million since the Foundation’s inception.

We are funding more scientists than ever before. From 1957 through 2016, the Foundation supported 400 scientists. In the last 10 years, we have funded 375 more, greatly accelerating our pace of funding. Every year, Foundation-funded research drives innovation in areas such as the development of new therapies, earlier PD detection, how to leverage AI, and ultimately, a cure. Meet our researchers.


Paolo Moretti headshot

Paolo Moretti, MD

2025 Trailblazer Award 

Scanning Family Trees for Hidden Parkinson's Risk Factors 

READ MORE

 


Catherine (Chi) Weindel headshot

Catherine (Chi) Weindel, PhD

2019 Postdoctoral Fellowship
2022 Launch Award

Investigating the Link Between Parkinson’s, Genetics and the Immune System

READ MORE


Hikaru Kamo headshot

Hikaru Kamo, MD, PhD

2025 Melvin Yahr Parkinson’s Disease Clinical Research Award

Improving Deep Brain Stimulation Using Artificial Intelligence

READ MORE


4. Supported local PD communities through more than 879 health and wellness programs. 

Our Community Grants support local, life-enhancing Parkinson’s programs across the U.S. — from dance and boxing classes to support groups. These programs encourage community while improving physical and mental well-being for participants. In 2025, we funded 92 local PD programs across 38 states, reaching more than 11,000 people with PD.

Additionally, we strengthened our chapter network to connect people with Parkinson’s and caregivers to local resources, support groups, classes and educational programs — while hosting local events like Moving Day.

Find Your Chapter

5. Launched policy and advocacy efforts at the federal and state levels. 

We formally entered the policy arena — advancing advocacy efforts that protect Parkinson’s research and access to care at the federal and state levels. Our policy priorities aim to: 

  • Increase research support toward better treatments and a cure
  • Strengthen care systems
  • Expand access to high-quality education tools and resources
  • Promote prevention strategies, including efforts to reduce exposure to environmental threats tied to Parkinson’s

Take action now using our newly launched Advocacy Center

6. Updated the Go-To Source of Information on PD: Parkinson.org 

With more than 8 million visitors in 2025, Parkinson.org is the go-to resource for the PD community, helping connect people to the information they need. New features include: 

Ask PAM
  • Online courses for everyone in the PD community, including healthcare providers on our Learning Lab.
  • More than 90 Spanish webpages, blog articles and a dedicated Spanish PD Library
  • Visitors can choose their own accessibility features. 
  • Launch of PAM, our AI chat tool, that provides evidence-based answers about Parkinson’s — anytime, anywhere.

In 10 years, the Foundation has provided a non-stop tranche of resources in our PD Library, including our Newly Diagnosed Guide, new Parkinson’s Today blog articles and podcast episodes. In response to COVID, we also launched PD Health @ Home — a virtual series that continues to provide new webinars, mindfulness and exercises programs every month. 

7. Driving new treatments through a joint drug discovery initiative. 

In 2022, the Parkinson’s Foundation entered into a partnership with Parkinson’s UK to power Parkinson’s Virtual Biotech, a global initiative accelerating PD drug discovery and development. In 2025, two new drugs advanced into clinical trials — clear evidence that early investment sparks innovation and reduces the risk of funding for future investors, while speeding up the development of new Parkinson’s therapies. Learn more.

8. Expanded the Global Care Network to reach more people.  

In the last 10 years, around 900,000 people have been diagnosed with Parkinson’s in the U.S. This is why we are committed to empowering people with PD to find expert care. To meet this need, we expanded our Global Care Network to connect more people with expert care. 

We have gone from providing care to 145,000 people with Parkinson’s and other movement disorders across 45 centers in 2016 to treating 364,739 people across 62 centers in 2026. 

We have added a new center designation — Comprehensive Care Centers — that feature a specialized team expert in Parkinson’s treatments — and Community Partners in Parkinson’s Care, a membership program for senior living communities and home health care agencies trained in PD care.

Find a designated Parkinson’s center near you. 

9. Making Hospitals Safer for people with Parkinson’s

One in 6 people with Parkinson’s will experience avoidable complications in the hospital. This is why we launched the Hospital Care Initiative to improve hospital care for people with Parkinson’s through nationwide, systemic changes. We also created the Hospital Safety Guide to help people advocate for their best care when in the hospital.   

10. Offering unwavering, continued support through our Helpline in English and Spanish.

Our Helpline connects people with Parkinson’s, caregivers, families and healthcare professionals to key PD information and tailored resources. 

Since 1998 our Helpline has provided vital information and resources to 356,400 people

Contact our Helpline at 1-800-4PD-INFO (1-800-473-4636) and Helpline@Parkinson.org.

11. Appointed our first Chief Medical Officer. 

We appointed Sneha Mantri, MD, MS, as our first-ever Chief Medical Officer. Dr. Mantri, a Movement Disorder Specialist from Duke University Medical Center, provides medical and clinical care leadership across our care initiatives, helping ensure our programs meet the needs of people with Parkinson’s. Her leadership allows us to elevate important topics she’s seen first-hand as a neurologist, including how to address stigma and Parkinson’s

12. Building community through local events. 

Woman on bike at Parkinson's Revolution event

Moving Day, A Walk for Parkinson’s, continues to unite PD communities across the country, raise awareness and embrace the power of exercise which is proven to help manage Parkinson’s symptoms. In the last 10 years, Moving Day has raised $38.9 million and hosted 410 events nationwide.

Additionally, six years ago we launched our second signature event, Parkinson’s Revolution. This in-person or virtual cycling experience generates awareness and raises funds that advance PD research, resources and better care for people with Parkinson’s.

Thank you to the supporters who make progress possible and fuel the impactful work that moves us forward. In the next 10 years and beyond we will build momentum, together, to find better treatments, and ultimately a cure. Find out how you can help. 

 
Advancing Research

Parkinson’s Foundation Shares 14 Scientific Posters at Seventh World Parkinson Congress

🧠 What will you learn in this article?

This article highlights the 14 scientific posters the Parkinson’s Foundation is presenting at the World Parkinson Congress, highlighting our work across research, care and education to improve life for people with Parkinson’s disease (PD). It discusses how we are:

  • Expanding access and inclusion in Parkinson’s research through initiatives like PD GENEration, helping people navigate clinical trials and genetic counseling training.

  • Reaching the Hispanic/Latino PD communities.

  • Working to improve real-world support and healthcare systems through partnerships, national policy and care innovation efforts.

The World Parkinson Congress is an international conference that brings the Parkinson’s disease (PD) community together — from people living with PD and care partners, to healthcare professionals, researchers and organizations working to make life better for people with Parkinson’s. This year, thousands will attend the event dedicated to Parkinson’s research and care in Phoenix, AZ, from May 24 to 27.

Below are the 14 scientific posters the Parkinson’s Foundation is sharing at the seventh World Parkinson Congress:

Researcher taking notes in a lab

RESEARCH FINDINGS

These posters focus on how we are making PD research more inclusive and why it is essential to involve people with Parkinson’s in the research process.

SEE ALL RESEARCH POSTERS

1. PD GENEration Sub-Studies: The Next Step to Engaging People with Parkinson’s in Research

PD GENEration: Powered by the Parkinson’s Foundation is an international research initiative offering at no cost genetic testing and counseling for people living with Parkinson’s. The Parkinson’s Foundation has launched four new sub-studies as an extension to PD GENEration. 

These include:

  1. PD GENEration Surveys: polls all PD GENEration participants on topics of interest in the PD community, such as environmental exposures and changes in diagnosis or medications.

  2. PD GENEration Family: offers genetic testing and counseling at no cost to parents, siblings or children (all over the age of 40) of eligible PD GENEration participants.

  3. PD GENEration Insights: collects expanded clinical data for eligible PD GENEration participants through self-report questionnaires and virtual clinician visits.

  4. PD GENEration Explore: collects plasma and administers smell identification tests to PD GENEration participants.

Main takeaways:

  • The four new PD GENEration sub-studies offer, for the first time, additional research opportunities to participants, further expanding engagement in research.

  • This expanded data collected contributes to the research community and helps researchers further their work to find a cure for PD. 

2. PD Trial Navigator: Personalized Guidance on Clinical Trial Enrollment for People Living with PD 

The Parkinson’s Foundation PD Trial Navigator is a new program designed to help people with Parkinson’s better understand and access clinical trials. It aims to accelerate enrollment in genetic and disease-modifying clinical trials, build a trial-ready community and empower people with Parkinson’s to make informed decisions about participating in research. The program builds on PD GENEration, using surveys and focus groups to understand barriers to research participation. It provides personalized support through one-on-one guidance, educational materials and direct connections to trial opportunities. 

Main takeaways:

  • Many people with Parkinson’s are interested in clinical trials but face barriers such as limited awareness, travel challenges and complex eligibility requirements.

  • Personalized guidance and education can significantly improve understanding and engagement in clinical research.

  • The Parkinson’s Foundation PD Trial Navigator program can help bridge the gap between genetic testing and participation in precision medicine trials.

3. Assessing Provider Performance in Simulated Genetic Counseling Sessions Within the PD GENEration — LARGE-PD study

This poster analyzed PD GENEration-related genetic counseling training delivered by Indiana University genetic counselors to clinicians in the Latin American Research Consortium on the GEnetics of Parkinson’s Disease (LARGE-PD).It reviewed strengths and weaknesses identified during mock genetic counseling sessions by analyzing 46 video feedback forms from two training cycles.

Main takeaways:

  • All clinicians who completed video feedback after their first video successfully met competency expectations. 

  • These results suggest that structured, iterative training programs can be an effective approach for standardizing and strengthening genetic counseling skills, which are essential for providers returning genetic results to people with Parkinson’s disease.

4. Building Genetic Counseling Capacity in Latin America to Facilitate the Sharing of Genetic Results with PD GENEration Participants — LARGE-PD study

This poster summarized the development and implementation of a genetic counseling training program for clinicians in Latin America participating in the LARGE-PD study. The program prepared clinicians to return genetic test results to people with Parkinson’s through counseling sessions. It evaluates the effectiveness of this training using feedback from mock counseling sessions and certification outcomes.

Main takeaways:

  • 46 video feedback forms across two training cycles showed that clinicians improved after structured feedback and successfully met competency expectations.

  • 32 clinicians across 12 countries were trained and certified, ensuring access to genetic counseling at every LARGE-PD site.

  • Structured, iterative training programs can effectively build local expertise, improving access to genetic information for people with Parkinson’s in Latin America.

    Doctor and senior woman looking at tablet together

CARE FINDINGS

These studies focus on how to improve care for people with Parkinson’s. 

SEE ALL CARE POSTERS

5. The National Roundtable on Parkinson’s Care and Innovation: A Multidisciplinary, Multi-Sector Convening Aimed at Addressing the Most Pressing Challenges in Parkinson’s Care

The U.S. faces a growing Parkinson’s care crisis as PD prevalence rises and shortages of trained health professionals limit access to quality care. The National Parkinson’s Project, the first federal legislation dedicated to ending PD, directs the Department of Health and Human Services to advance prevention, diagnosis, treatment and cures for Parkinson’s and related disorders. As a national leader in Parkinson’s care and to help guide PD care priorities, we held a National Roundtable on Parkinson’s Care and Innovation on September 4, 2025.

Main takeaways:

  • The Roundtable brought together experts across disciplines and industries, including people with PD and care partners. 

  • Discussion led to a multiyear roadmap to transform PD care through policy reform and action: Parkinson's Care and Innovation: A Patient-Centered Agenda for Change.

  • The agenda outlines four priority solutions to guide the National Parkinson’s Project: building community clinician capability, developing a sustainable and integrated care model, defining a minimum clinical dataset, and prioritizing patient-centered technologies.

Learn more about our Policy Priorities

6. Prioritizing the Improvement of Hospital Care for People with Parkinson’s Disease through the Parkinson’s Foundation Hospital Care Initiative

This poster details how the Parkinson’s Foundation is leading the national effort to improve hospital care for people with Parkinson’s through systemic changes in policy, technology, culture and education. Our Hospital Care Initiative aims to eliminate preventable harm and promote higher reliability in care for people with PD in the hospital.

Main takeaways: 

  • The Parkinson’s Foundation is actively working with more than 50 Health Systems to improve care for people with Parkinson’s in their hospitals. 
  • We are raising awareness and building partnerships to continue to expand our reach. 
  • We are funding and leading research projects to show how negative hospital outcomes can be addressed through specific solutions designed to improve hospital care for people with PD.  

7. Optimizing PD Care: Empowering People with Parkinson’s Before, During and Between Appointments 

Healthcare appointments are critical opportunities for people with Parkinson’s and their healthcare teams to improve quality of life. However, PD appointments can feel overwhelming. People with PD and clinicians report challenges with making the most of their time together. The Optimizing Parkinson’s Care Initiative aims to provide education, training and resources to empower people with PD to become more active partners in their PD care.  

Main takeaways:

  • We collaborated with people with PD, care partners, clinicians and health literacy experts to create resources focused on making the most of PD care, through actionable steps taken before, during and between appointments.  

  • There is an emphasis on self-reflection, self-education, self-advocacy and understanding that speaking up about lived experience is a trusted and essential part of the appointment.  

  • The Optimizing Care webpage and Steps to Prepare for a Parkinson’s Appointment worksheet guide people with PD to select their top three priorities based on what’s most impacting their daily life, what’s most time sensitive, and what matters to most to them.  

8. Community Partners in Parkinson’s Care: A Survey of Current Site Champions of the Program

Community Partners in Parkinson’s Care educates and prepares staff in senior living communities and home care agencies to provide better care for people with Parkinson’s across the U.S. Currently the program serves 97 partners within 27 states. This program has trained more than 30,000 direct care providers. This poster shares outcomes of a recent survey of site champions. Site Champions ensure ongoing required staff training, collect program outcomes on a semi-annual basis and maintain communication and collaboration with Community Partners program staff.

Main takeaways:

  • Surveys showed improvements in Parkinson’s care, including better medication accuracy and timeliness, more comprehensive care plans, increased exercise integration and greater staff awareness of effective communication and individualized care needs.

  • Limited staffing and time for training were identified as the biggest challenges in ongoing success of the program.

  • Survey results will be used for future program modifications and updates.

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

This poster explores how healthcare providers prefer to learn through online continuing education (CE) when caring for people with Parkinson’s. A survey of nearly 5,000 professionals found that most prefer live or recorded webinars lasting one to two hours, especially when content is directly relevant to clinical practice. These findings will help guide the development of more accessible, engaging, and effective educational programs. 

Main takeaways:

  • Healthcare providers prefer clinically relevant, interactive and flexible online learning formats — especially live webinars.

  • Many providers face barriers such as limited time and financial constraints, and some struggle to complete courses due to workload or technical issues.

    Senior man using his laptop at home

EDUCATION FINDINGS

These studies focus on trends in the Parkinson’s community and aim to provide information that can empower people in the PD community.

SEE ALL EDUCATION POSTERS

10. Processing a Challenging Hospital Experience: Providing a Tool for People with Parkinson’s to Document a Difficult Stay and Determine Next Steps

After a difficult hospital experience, many people are unsure of next steps. This poster details how the Parkinson’s Foundation, in collaboration with members of the PD community, developed a guide to help people with Parkinson’s and their families document and process their hospital experience. The form includes robust, PD-relevant questions about their hospital stay and provides suggestions for support and preventing future harm.

Main takeaways: 

  • The Parkinson’s Foundation offers a questionnaire as a digital form on our website. 

  • People with PD and care partners can submit their answers anonymously, share their experiences to help raise awareness, and/or request outreach and resources from the Foundation.  

  • Forms can be downloaded, printed and saved for future appointments or hospital stay. 

11. Empowering Hispanic/Latino Communities Through Research and Education: Expanding Access to Parkinson’s Genetic Studies Across Latin America

Hispanic/Latino communities have historically been underrepresented in Parkinson’s genetic research, limiting diversity and equity in scientific discovery. To address this gap, the Parkinson’s Foundation expanded its PD GENEration initiative in collaboration with LARGE-PD, bringing education, genetic counseling and research opportunities directly to communities across Latin America. Our objective was to increase access to PD genetic research among Hispanic/Latino populations by implementing culturally tailored education and recruitment events across Latin America. 

Learn more about PD GENEration. Learn more and enroll in:

Main takeaways:

  • Between 2024 and 2025, events in Mexico, Colombia, El Salvador, and the Dominican Republic reached 700 people and enrolled 240 new participants, increasing representation in PD GENEration. 
  • These events integrated genetics education, counseling, and on-site enrollment, led by local clinicians and institutions to build trust and reduce barriers to participation. 
  • The initiative strengthened long-term collaborations with local hospitals and clinicians, creating a sustainable and replicable model for community engagement. 
  • Ultimately, this work demonstrates that combining culturally relevant education with direct access to research participation can reduce barriers, increase trust, and improve representation in PD genetic research. Expanding these community-driven efforts is essential to advancing more inclusive and equitable Parkinson’s research.

12. Joining Forces: A Collaborative Partnership between the Veterans Health Administration and the Parkinson’s Foundation

There are more than 110,000 veterans living with Parkinson’s in the U.S. Since 2020, the Parkinson’s Foundation and the Department of Veterans Affairs (VA) have partnered to improve the health, well-being and quality of life of veterans living with PD. Together, we create and provide veterans with PD and their loved ones resources. The partnership continues to enhance access to VA care and support veterans living with PD. Explore veterans’ resources.

Main takeaways:

  • The Parkinson’s Foundation and VA have:

    • Engaged more than 20,000 veterans with PD and loved ones 

    • Hosted more than 20 webinars for veterans with more than 16,000 registrations 

    • Launched six co-created resources including Parkinson.org/Veterans webpages and Veterans Guide

    • Trained more than 150 VA professionals through the Parkinson’s Foundation Team Training program

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

This project updated exercise guidelines for people with Parkinson’s to reflect the latest research and expert input. A team of specialists reviewed current evidence, identified gaps and revised recommendations to improve clarity, safety, and usability. The updated guidelines were reviewed by international experts and people with Parkinson’s, followed by a public comment period.

Main takeaway:

  • Key updates to exercise guidelines emphasize safe exercise practices, referral to physical therapy and tailoring programs based on disease stage and individual needs.

14. HOPE PALS: The power of collaboration at the service of the Spanish-speaking PD community

HOPE PALS (Hispanic Organizational Partners Engaged in Parkinson’s Awareness and Leadership Solutions) is a cross-organizational coalition launched by the Davis Phinney Foundation to strengthen collaboration among Parkinson’s organizations. Coalition partners include the American Parkinson’s Disease Association, LARGE-PD, The Michael J. Fox Foundation, the Parkinson’s and more. Its goal is to improve the experience of Spanish-speaking people and families affected by Parkinson’s by maximizing shared resources, increasing awareness and advancing knowledge exchange across organizations.

Main takeaways:

  • Through monthly meetings, organizations have expanded cross-promotion of resources and inspired new collaborative projects.

  • Twice a year, the Davis Phinney Foundation Espacio Parkinson webinar invites coalition members to share materials and events, strengthening visibility and access for the Spanish-speaking PD community.

  • HOPE PALS demonstrates the power of cross-organizational collaboration to amplify education and support for underserved PD communities. By leveraging digital connections and shared leadership, this coalition has elevated collective impact, enhanced community trust and expanded culturally relevant resources for the international Spanish-speaking Parkinson’s community.

Stay up to date with the latest Parkinson’s Foundation programs, research and happenings in our Parkinson’s Today blog

View All 2026 Posters

Discover the scientific posters the Parkinson’s Foundation presented at the seventh World Parkinson Congress.

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