My PD Story

Anika Ganu performing on a keyboard
Family Members

Anika Ganu

The first time I noticed Parkinson’s disease (PD) was when my grandfather was visiting us and we were walking outside. He suddenly hesitated and stopped in his tracks — almost like his feet were stuck to the ground and he couldn’t lift them. I would later learn this was freezing of gait: a classic Parkinson’s symptom. 

The next time he visited, his facial expressions had become rigid and his speech was difficult to understand. At that time, for me, Parkinson’s was a background conversation because I felt like it was something the adults around me understood better than I did.

Over the next decade, his symptoms gradually increased, affecting his balance and ability to walk unassisted. He began speech therapy to strengthen his vocal muscles and started using a walker to balance his gait. Watching his progression motivated me to understand the different aspects of Parkinson’s disease. 

I started reading about Parkinson’s and how the lack of biomarkers prolongs the disease diagnosis and delays receiving the correct treatment. I began to explore how technology could help better track and detect early changes in motor skills. 

My first project was building a gait analyzer using pressure sensors attached to shoe soles and a machine learning model to distinguish pressure patterns as typical or atypical gait. The project was recognized at a regional science fair, which encouraged me to keep going. 

I continued to refine this work by designing a set of at-home activities to capture different aspects of gait and posture. I measured them using inertial sensors on a smartwatch and processed them with an AI model to identify motion differences associated with Parkinson’s. I called this set of apps “ParkinSpot” and tested them on my own data where I simulated motor skill anomaly symptoms. 

I was very excited that my research got selected for presentation at the International Movement Disorder Society’s annual conference this year. As I head into my senior year of high school, I aspire to study biomedical engineering in college so that I can continue contributing towards finding solutions for neurodegenerative diseases.

Through the Parkinson’s Foundation, I have been able to connect with others who have been impacted by this disease. It has been gratifying to have the opportunity to hear their personal stories and concerns and to be able to share with them the numerous resources available through the Parkinson’s Foundation. 

Over the past year, I have also been raising funds for the Foundation through my music performances at local venues. This has given me the chance to combine my love for singing with my drive to make a difference for those affected by Parkinson’s. 

Working as a Parkinson’s Foundation ambassador has shown me how much a community like this matters — where everyone contributes in their own way to make life better for patients. 

If Parkinson’s has touched your family or you want to learn more about the fight against this disease, the Foundation is a great place to start.

Interested in getting involved? Explore the many ways you can fundraise to support the Parkinson’s Foundation.

Raise Awareness

Dentro de la ciencia: la investigación sobre el Parkinson hoy

🧠 ¿Qué aprenderá en este artículo?

Este artículo destaca tres áreas clave de investigación sobre el Parkinson que los científicos están explorando en este momento. El artículo analiza lo siguiente:

  • Cómo la investigación sobre el Parkinson se está acelerando debido a que no existe cura, los casos están aumentando a nivel mundial y la carga económica en EE. UU. es significativa.
  • Tres objetivos de investigación especialmente activos son la agregación de la proteína alfa-sinucleína, la disfunción mitocondrial y la inflamación cerebral, y cómo interactúan.
  • Nuevas herramientas están en desarrollo para ayudar con la detección más temprana y precisa, un mejor seguimiento de la progresión y avanzar hacia tratamientos personalizados que modifiquen la enfermedad.
Investigadores en un laboratorio

La investigación sobre la enfermedad de Parkinson (EP) avanza rápidamente, con avances en el horizonte que podrían transformar el tratamiento y ofrecer esperanzas a millones de personas.

Tres áreas clave de investigación se encuentran entre las más activas y prometedoras: la agregación de alfa-sinucleína, la disfunción mitocondrial y la neuroinflamación. Conozca qué significan estos términos, hacia dónde se dirige la ciencia y cómo los avances en estas áreas pueden conducir a nuevos tratamientos y terapias que modifiquen la enfermedad.

Este artículo se basa en una de las Charlas con Expertos – Expert Briefings de la Parkinson's Foundation que explora los avances en la investigación sobre el Parkinson, presentada por la Dra. Laurie Sanders, profesora asociada de las divisiones de Neurología y Patología, Trastornos del Movimiento y Ciencias Cerebrales Traslacionales de la Facultad de Medicina de la Universidad de Duke, un Centro de Excelencia de la Parkinson's Foundation.

La urgencia impulsa la investigación

La necesidad apremiante de descifrar el código detrás de las causas del Parkinson nunca ha sido mayor. Aunque existe una amplia variedad de tratamientos para controlar los síntomas de la EP, no existe cura. Más de 11 millones de personas en todo el mundo viven con el Parkinson, incluido más de 1 millón en EE. UU.

Se espera que los casos de la EP superen los 25 millones a nivel mundial para 2050. El impacto económico es asombroso: el Parkinson le costó a EE. UU. $82,2 mil millones en 2024. Más de $23 mil millones se destinaron a costos médicos directos, mientras que casi $60 mil millones reflejan costos indirectos, incluidos los ingresos perdidos y las cargas sobre los cuidadores.

La determinación de resolver el misterio del Parkinson posiblemente se refleja mejor en la cantidad de estudios actuales en el proceso de investigación. El sitio ClinicalTrials.gov de los Institutos Nacionales de Salud (NIH) muestra más de 200 ensayos clínicos relacionados con el Parkinson que están reclutando activamente o están por reclutar. Además, la investigación fundamental que avanza nuestra comprensión general de la biología del Parkinson continúa llevándose a cabo, especialmente en las siguientes áreas.

3 áreas clave de investigación sobre el Parkinson en este momento

El Parkinson es complejo, ya que los científicos creen que una combinación de factores ambientales y factores genéticos son la causa del Parkinson. La investigación requiere abordar el problema desde múltiples ángulos. Los estudios sugieren que el desarrollo y la progresión del Parkinson involucran interacciones entre tres áreas biológicas clave:

1. Agregación de proteínas: alfa-sinucleína

El Parkinson involucra la pérdida de neuronas productoras de dopamina y una acumulación de alfa-sinucleína, una proteína normalmente útil que se encuentra en el cerebro y que ayuda a las células cerebrales a comunicarse. Existe evidencia genética muy sólida que vincula la alfa-sinucleína con la enfermedad de Parkinson a través del gen SNCA, que fue el primer gen asociado con la EP en ser identificado.

La alfa-sinucleína se vuelve problemática cuando se pliega incorrectamente, agrupándose en acumulaciones llamadas cuerpos de Lewy que pueden propagarse entre las células cerebrales. Muchos tratamientos para la EP se dirigen a estas acumulaciones de alfa-sinucleína y las eliminan. Sin embargo, aunque los cuerpos de Lewy son un sello distintivo del Parkinson, todavía existe cierta controversia sobre si son parte del problema del Parkinson o actúan como un factor protector.

2. Disfunción mitocondrial

Las mitocondrias son centrales de energía que son de importancia crítica para la buena salud. Funcionan mal en el Parkinson, afectando la energía celular y contribuyendo a la muerte celular. Las neuronas —células cerebrales que envían comunicaciones eléctricas y químicas— son especialmente vulnerables a la disfunción mitocondrial.

Ciertas mutaciones genéticas pueden afectar la función mitocondrial, al igual que las toxinas ambientales como los pesticidas (como el paraquat).

Los factores de riesgo genéticos, incluidos PINK1 y PRKN que están específicamente relacionados con las mitocondrias, también pueden influir en el desarrollo y la gravedad de la EP.

3. Inflamación cerebral

Cuando se combina con los otros dos factores, los estudios sugieren que la inflamación cerebral (la respuesta protectora del cerebro al daño, que puede sobreestimularse en el Parkinson) puede empeorar esos problemas. Además, la inflamación puede debilitar la barrera hematoencefálica, lo que puede permitir que las células inmunitarias de la sangre entren al cerebro, lo cual puede acelerar la neurodegeneración.

Avances que aceleran la investigación del Parkinson

Antes considerado únicamente un trastorno del movimiento, ahora sabemos que el Parkinson es una enfermedad multisistémica que puede afectar todo el cuerpo — incluidos problemas urinarios, problemas intestinales y cambios en el pensamiento, el sueño y el estado de ánimo.

La participación de los pacientes es esencial para el progreso de la investigación de la EP. Las influencias importantes que profundizan nuestra comprensión del riesgo de la EP incluyen estudios con alcance global como PD GENEration: Impulsado por la Parkinson's Foundation, que proporciona información sobre cómo el Parkinson está vinculado a la genética mediante la provisión de pruebas genéticas y consejería a personas con un diagnóstico confirmado de EP. Es importante destacar que los descubrimientos biológicos realizados sobre el Parkinson mediante pruebas genéticas también pueden aplicarse a casos de Parkinson que no tienen un vínculo genético conocido.

Se están desarrollando nuevas herramientas que tienen la posibilidad de detectar el Parkinson más temprano, comprender mejor su progresión y ayudar a rastrear la efectividad de las terapias para la EP. Estas herramientas incluyen:

  • Imágenes cerebrales para ayudar a los investigadores a visualizar la propagación del Parkinson, identificar áreas específicas de patología cerebral y aumentar la precisión del diagnóstico, incluidos los avances en el desarrollo de ligandos de tomografía por emisión de positrones (PET), resonancia magnética de alta resolución e imágenes de difusión.
  • Pruebas de laboratorio ultrasensibles para medir nuevos biomarcadores del Parkinson a partir del líquido espinal y otros fluidos como la sangre. Estas pruebas incluyen:
    • ensayos de siembra de alfa-sinucleína (SAA) para detectar cantidades diminutas de alfa-sinucleína mal plegada.
    • pruebas que pueden identificar la neurodegeneración, como la de la proteína neurofilamento ligero, que se ha vinculado con la EP, y otros marcadores de inflamación.
    • Pruebas para el daño del ADN mitocondrial, como MitoDNADX, una prueba de sangre reciente desarrollada por investigadores de la Universidad de Duke para su uso como un biomarcador potencial en la EP.
  • Modelos de enfermedad mejorados, que incluyen:
    • células madre pluripotentes inducidas (iPSC), desarrolladas mediante la recodificación de células de personas con la EP para convertirse en neuronas de dopamina, lo que permite el estudio de la disfunción celular relacionada con la EP en tejido de pacientes.
    • organoides, que son cerebros en miniatura que permiten a los científicos estudiar los mecanismos del Parkinson y probar posibles terapias.
    • modelos animales refinados, que están genéticamente modificados para modelar mejor los síntomas del Parkinson.

Avances de investigación y objetivos

Los científicos están investigando formas de ralentizar o detener el Parkinson, identificar personas para la participación en ensayos relevantes de la EP y proporcionar tratamientos dirigidos.

Se han identificado casi 100 formas de alfa-sinucleína, con investigación para determinar cuáles son las más tóxicas. A medida que los científicos profundizan en la progresión de la EP, también han descubierto patología de alfa-sinucleína a lo largo del tracto gastrointestinal de personas con la EP.

La investigación sobre el Parkinson y el tracto gastrointestinal se está expandiendo, incluso a través del Consorcio de Comunicación Intestino-Cerebro en la Enfermedad de Parkinson, un esfuerzo conjunto entre el NIH y el Duke Clinical Research Institute.

Muchas personas con Parkinson también experimentan la acumulación de otras proteínas como placas de beta-amiloide y ovillos de Tau, características clave de la enfermedad de Alzheimer. Un estudio prometedor en curso está explorando si la terapia oral buntanetap es segura para el uso a largo plazo en personas con la EP. Buntanetap tiene como objetivo reducir otras proteínas tóxicas. Los tratamientos de investigación para el Parkinson también incluyen inmunoterapias que usan anticuerpos para atacar grupos de proteínas dañinas y enfoques que ayudan a las células a gestionar o eliminar proteínas mal plegadas.

Las mutaciones en el gen GBA1, un factor de riesgo genético común para el Parkinson, reducen la actividad de la enzima glucocerebrosidasa, contribuyendo a la acumulación de alfa-sinucleína. Se están desarrollando nuevos tratamientos para aumentar la actividad de la glucocerebrosidasa para ayudar a las células a eliminar más eficazmente la acumulación dañina. Una variedad de terapias también están en proceso de investigación para rescatar la función mitocondrial.

El camino a seguir. 

La investigación sobre el Parkinson es fundamental para el progreso hacia nuevas terapias modificadoras de la enfermedad que puedan ralentizar o detener la progresión de la enfermedad. Al mejorar nuestra comprensión de las formas en que la alfa-sinucleína, la disfunción mitocondrial y la inflamación interactúan, nos acercamos a tener tratamientos personalizados de medicina de precisión para la EP. Cuando combinamos este conocimiento con la participación de pacientes en la investigación, avances en tecnología y nuevos descubrimientos de biomarcadores, continuamos avanzando más cerca de una cura para el Parkinson.

Cómo participar:

Advancing Research

Artificial Intelligence is Unlocking New Possibilities for Parkinson’s Care

🧠 What will you learn in this article?

This article is based on a Parkinson’s Foundation Expert Briefing about how Parkinson’s disease (PD) care and research are leveraging artificial intelligence (AI) technology. It highlights how: 

  • AI is becoming a useful support tool in PD care, helping with tasks like documenting visits and tracking symptoms.
  • People with Parkinson’s can use AI tools to better understand symptoms, medications and next steps after appointments, though it’s important to protect privacy. 
  • To maximize your PD-related AI conversations. 
  • Apps, wearables and symptom-tracking tools combined with AI may help personalize care.
  • Researchers are using AI to accelerate Parkinson’s discoveries.
Woman using laptop

Artificial intelligence (AI) technology is shaping how healthcare information is shared and used, including for people living with Parkinson’s disease (PD). Discover the value of AI tools, how to engage with them responsibly and why your care team’s guidance and judgment remain essential to high-quality care.

This article is based on a Parkinson’s Foundation Expert Briefing hosted by movement disorders specialist and clinical informaticist Allan D. Wu, MD, at Northwestern Medicine Parkinson's Disease and Movement Disorders Center, a Parkinson’s Foundation Center of Excellence.

Making Thoughtful Use of Smart Technology

Artificial intelligence has rapidly cemented itself as a supportive tool to enhance human expertise and provide people with around-the-clock access to healthcare information. However, people are wary that AI may weaken relationships between doctors and patients or chatbots may provide inaccurate answers. A 2025 YouGov poll found more than half of Americans were cautious or skeptical of AI, even as a 2025 Gallup poll found 99% of U.S. adults used an AI-enabled product weekly and 57% used generative AI for personal purposes.

Healthcare experts remain cautious, too. Lessons from the nationwide rollout of electronic health records (EHR) showed that new technology can create added burdens. Many EHR systems didn’t work well together, focused heavily on paperwork and billing and increased demands and burnout for doctors without improving patient care.

The rapidly expanding field of clinical informatics emphasizes using AI to enhance and support — not replace — human care. Physicians certified in this field use their expertise in medicine and technology to help improve healthcare systems and patient care, serving as a connection between technology and patient care.

About AI 

AI includes rule-based systems, statistical models, machine learning and deep learning, which are used in healthcare for documentation, pattern detection and prediction.

AI tools in healthcare can document visits, draft records for physician review, identify patient risks, support research or help manage patient communications. People have the right to ask where their health data is going and how it will be handled, or to opt out of AI-powered recording and documentation of healthcare visits.

AI processes and applies information in different ways:

  • Ambient AI, with patient consent, can capture patient-doctor conversations, freeing doctors to focus on face-to-face interactions.
  • Generative AI can transcribe medical conversations into visit records for the doctor to review and approve. 
  • Predictive AI commonly uses machine learning models to look at large data volumes to spot patterns and predict outcomes. In healthcare, it might be used to help identify a patient’s potential health risks. In research, it is being used for everything from drug development to the analysis of genetic data.

How People Are Using AI as a Healthcare Partner 

Many people are familiar with AI chat platforms and assistants – these use large language models trained on massive amounts of written and spoken data to simulate human conversation. They are trained to learn from interactions to deliver accurate, personalized responses.

People can leverage AI tools to:

  • Explain PD symptoms, diagnoses or medications. For example, Ask PAM (Parkinson’s Assistance Messenger) is an AI-powered chat tool from the Parkinson’s Foundation that provides trusted, evidence-based answers about Parkinson’s at your fingertips.
  • Understand medical bills or insurance benefits.
  • Organize next steps after a healthcare visit.

While AI can be helpful, use caution when using it: 

  • Protect your privacy. Never provide sensitive information.
  • AI can sometimes reinforce incorrect ideas.
  • AI does not understand accountability or moral responsibility.
  • AI can present false information as fact. It can also present biased information.
  • Be wary of “AI slop” low-quality content generated without human effort.

How to Maximize Your PD-related AI Conversations

Get the most reliable information when working with AI:

  • State the goal. “Help me prepare for my doctor appointment.” 
  • Provide background: “I was diagnosed 6 years ago. I have tremor dominant Parkinson’s. I am taking carbidopa/levodopa. My tremor has worsened over time.”
  • Specify resources. “Reference the Parkinson’s Foundation guide to Preparing for a Medial Appointment.”
  • Explain how you want the message delivered: “Give me a short, bulleted list in plain language.”
  • Ask for broad perspectives. “You are a Parkinson’s expert.” Or “What perspective and questions might my neurologist, physical therapist, social worker, psychologist or family members have?” 
  • Ask for pros and cons, alternatives and multiple options.
  • Save your work. AI conversations are often temporary. 

Sometimes, AI will ask questions for more context. This is best used when you aren’t sure what information you need. “I need to talk to my neurologist about deep brain stimulation. Before you respond, ask me questions you need to give me useful guidance.”

Other ways to guide output are to ask AI to at a sixth-grade level or to be concise. Ask it to review its response and where the answer could be improved.

The Potential for AI in PD Care

Woman looking at Smartwatch

People living with Parkinson's may find it difficult to accurately remember when symptoms occurred or how they changed over time. Symptom-tracking tools and wearables — including smartphone apps, Apple Watch-based tools and devices such as Personal KinetiGraph and StrivePD — are helping monitor symptoms over time. Other wearable technologies include devices that monitor cognition, tremor, freezing of gait, sleep and speech.

AI holds the promise to combine data from these devices with pre-visit surveys, Parkinson’s disease rating scales and patient diaries to help care teams develop personalized wellness plans that adapt as symptoms and needs change, and to assist in connecting people with relevant clinical trials.

Tech Tools for Daily Living

Explore apps and digital tools that can help you track symptoms and support daily life with Parkinson’s.

How AI Is Driving Deeper Insights into PD

Researchers are using AI to expand their understanding of Parkinson’s:

  • Bioinformatics, the use of AI to assist in analyzing biological information, is being harnessed in trials such as PD GENEration: Powered by the Parkinson’s Foundation, an international study offering genetic testing and counseling for people living with Parkinson’s at no cost.
  • AI and machine learning are helping process and interpret data from the Parkinson's Progression Markers Initiative (PPMI), a Michael J. Fox Foundation-sponsored study to identify and measure PD biomarkers — substances in the body that provide information about health.
  • Artificial intelligence is helping researchers discover biologic subtypes of Parkinson's by examining data from skin biopsies, genetic statistics and brain imaging. 
  • Alpha-synuclein is a brain chemical that misfolds and clumps in people with Parkinson’s. AI is helping researchers better understand the process and how it is linked to disease progression.
  • AI has the potential to help speed up new drug discoveries by identifying which compounds might target PD.

Emerging Developments

On the horizon, look for AI tools that:

  • Offer continuous passive monitoring of PD symptom patterns such as voice, gait and typing. 
  • Reach out when a wearable device signals a change.
  • Send adaptive medication reminders based on patterns of “on” times, when PD medication is working well, and “off” times, when symptoms return.
  • Provide AI symptom triage, assessing symptoms and suggesting next steps.
  • Automate creation of healthcare action items, referrals and automatic scheduling.

AI, along with PD GENEration and other research studies, is also laying the groundwork for precision medicine — the aim of tailoring treatment to fit the needs of everyone with Parkinson’s. It also holds the potential to further refine surgical planning and programming for DBS devices used to treat Parkinson’s symptoms. 

Learn More

Videos & Webinars

Expert Briefing: Artificial Intelligence & Parkinson’s: Understanding the Promise & Pitfalls

May 13, 2026

Artificial Intelligence (AI) is increasingly shaping how health care information is shared and used—including for people living with Parkinson’s and their care partners. But what exactly is AI, and how does it differ from augmented intelligence, which is designed to support (not replace) human judgment?
 
In this Expert Briefing, our speaker will provide a clear, practical overview of AI’s role in the delivery of care for people with Parkinson’s. The session will explore how AI-enabled tools may influence communication, symptom tracking, and care personalization, and how individuals and care partners can engage with these tools responsibly.
 
The presentation will also address key legal and ethical considerations—such as privacy, accuracy, and over-reliance on technology—while emphasizing the ongoing importance of human connection in care.

Download Slides

Webinar Summary

Additional Resources

Presenter

Allan D. Wu, MD, FAAN
Parkinson’s Disease and Movement Disorders Center
Northwestern University Feinberg School of Medicine, A Parkinson's Foundation Center of Excellence, Program Director, Northwestern Clinical Informatics Fellowship
Department of Pathology, Feinberg School of Medicine, Faculty Clinical Informatics Consultant
Stanley Manne Children’s Research Institute
Ann & Robert H. Lurie Children’s Hospital of Chicago

My PD Story

Gary Gosselin
People with PD

Gary Gosselin

INTENT. Perseverance. You’re not alone.

I was diagnosed with Parkinson’s disease (PD) in May 2020, right in the middle of the COVID-19 pandemic. Like a lot of people, I don’t remember much of what the doctor actually said. I do remember walking out of there thinking, “OK, now what?”

Because I was adopted, I don’t have any family medical history to rely on. My mind went straight to my two sons and four grandchildren — what does this mean for them? I remember thinking I need to understand this, for them as much as for me.

Those first months were a bit of a blur. A lot of appointments, a lot of questions, and a lot of just trying to make sense of it.

Some mornings just took a little more to get going. Nothing dramatic — I’d sit for a minute before starting. Just taking a moment before the day began. Some days it was fatigue or just feeling a step behind — the kind of things people don’t really see.

That’s where one word started to matter: Perseverance. I had it written on a card on my file cabinet and I saw it every day. It wasn’t anything fancy, but it reminded me to keep moving forward, even when I didn’t have it all figured out.

A few years later, through the Parkinson Voice Project, I was introduced to another word: INTENT — living and speaking with purpose.

Those two words just clicked for me.

So, in 2024, I made a simple wristband — partly for myself, and partly to thank the people who had helped me along the way. I ordered just 10. INTENT on one side, Perseverance on the other.

That was it. No plan, no idea it would go anywhere. I put it on every morning. I started sharing them—and then people began to ask about them.

Then something happened that changed everything.

I was on a Parkinson’s Zoom call with a group from Boston, telling the story of the Resolve Band, when someone held one up. They had gotten it the day before through Parkinson Voice Project — one of the ones I had sent to Dallas to thank them for their project.

That’s when it hit me — this thing had taken on a life of its own. And the message was pretty simple: You’re not alone.

Since then, hundreds of bands have been made available to people with Parkinson’s disease, care partners and clinicians at no charge. It’s also led me into some advocacy work, which has been another way to stay connected and give something back.

For me, though, it still comes back to something simple. Focus on what you can control. Stay engaged. Keep moving forward. I’ve been lucky. I’ve got a great family who’s been with me every step of the way.

I’ve also had the chance to participate in research studies and clinical trials, including PD GENEration: Powered by the Parkinson's Foundation.

Participating in PD GENEration helped me understand what my diagnosis really meant — not just for me, but for my family. When I got the results back, I sat down and wrote an email to my two sons, my wife and other family members to walk them through it. That’s how important it felt to me. The process itself was straightforward, but more than anything, it felt like I was doing something that mattered — for them and for others down the road.

What I didn’t expect was how much that experience would carry forward. A few months later, I was in Washington, DC, at the Parkinson’s Policy Forum, meeting and advocating with my senators and congressman.

I shared this story — how PD GENEration gave my family clarity and relief — and how programs like it only exist because of the broader research infrastructure supported by non-profits like the Parkinson’s Foundation and the NIH.

For me, it wasn’t just participating in a study. It became something I could speak to —real experience, real impact — and use to advocate for continued investment in Parkinson’s research so more families can have that same clarity.

Participating in research and advocacy work has given me another way to stay engaged and give something back. What gives me hope is the community and the fact that things are moving in the right direction.

Gary Gosselin at the World Parkinson Congress 2026

I just returned two days ago from Phoenix, where I attended the World Parkinson Congress, where I gave out many English and Spanish wristbands and presented a poster abstract related to the Resolve Band and advocacy work.

If I had one thing to say to someone newly diagnosed, it would be this: Take a breath. You don’t have to solve this all at once. Just take the next step. That’s what I do.

Every day starts the same way—

With INTENT.

And with Perseverance.

Some days it’s just for me. Other days, it starts a conversation.

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.

Raise Awareness

Insights from our 2026 State of the Community Survey

🧠 What will you learn in this article?

  • Key takeaways from the Parkinson’s Foundation 2026 State of the Community Survey.
  • How the Foundation will use survey results to help shape programs and resources.
  • Real-world insights about care, research participation, and more for the Parkinson’s disease (PD) community.  
Couple filling out survey together

Each year, the Parkinson’s Foundation surveys the Parkinson’s disease community to learn what topics matter most and what support people need.

Results from our 2026 State of the Community Survey guide Parkinson’s Foundation programs and resources, ensuring we stay focused on what matters most to people affected by PD.

This year, more than 9,000 people (people with PD, care partners, family members, friends and health professionals) took the survey in English and Spanish —up 30% from 2025. Responses came from all 50 states and from people outside the U.S., giving us valuable insight into the experiences and needs of our global Parkinson’s community.

2026 State of the Community Survey Findings

Below are key findings from this year’s survey.

1. Understanding symptoms, medications, and treatments remain top priorities.

Survey participants continue to mention movement symptoms, non-movement symptoms ,and knowledge about medications and treatment options as top concerns. More than half identified movement symptoms (61%) and non-movement symptoms (52%) as most concerning, especially tremor, gait and balance, sleep, mood and cognition.

Participants expressed strong interest in learning more about symptom management and treatment options. Similarly, Spanish-speaking community members were most interested in research updates and treatments options.

Key takeaway

People want clear, trusted information about symptoms, treatment options and research. We will use these findings to guide future education and programs.

Visit our PD Library to explore topics that matter most to you.

2. Uncertainty about what to discuss during medical appointments and barriers to care continue to impact the community.

A big challenge during appointments is knowing which symptoms and questions to ask the PD doctor, and many find it hard to talk about mental and emotional health. Similar to last year, most people said they spend 15–30 minutes with their provider.

“I believe in narrative medicine, where I encourage patients to share their Parkinson’s story — focusing on the symptoms affect them the most and working together to create a personalized care plan that empowers them to take an active role.”

— Sneha Mantri, MD, Parkinson’s Foundation Chief Medical Officer

About 25% of respondents went to the emergency room or stayed in the hospital in the past year, and only 38% knew about the Parkinson’s Foundation Hospital Safety Guide.

Although most reported not having barriers to care, others said it can be hard to get services and support. In the English survey, the most common barriers were:

  • Not knowing what services are available or how to get them
  • Trouble getting appointments
  • Having to travel far to get care

For Spanish-speaking participants, the cost of services was the top barrier, while other challenges included language, transportation and not having enough services available.

Key takeaways

Medical appointments can feel overwhelming, especially as symptoms change over time. These findings show a need for tools and resources that help people feel ready and more confident during healthcare visits. Learn how to make the most of your care.

Getting Parkinson’s care looks different for everyone. Understanding barriers of accessing quality care helps us see where more education, support and outreach are needed.

3. Awareness of PD GENEration is growing, but research participation gaps remain.

In the English survey, half of participants had heard of PD GENEration: Powered by the Parkinson’s Foundation, compared to only 33% among Spanish-speaking community members. But hearing about it doesn’t always mean participating in the study. About 60% of people who were aware and eligible took part in PD GENEration, with substantially fewer Spanish speakers taking part (32%).

Outside of PD GENEration, most respondents said they have not participated in clinical research studies.

Key takeaway

These findings show we can do more to explain clinical research and help people understand how to take part in research studies, including in PD GENEration.

PD Trial Navigator is a new program that helps connect PD GENEration participants to relevant studies, while providing personalized support throughout the process.

4. People are seeking trusted information, support and community resources.

Participants shared that the Parkinson’s Foundation website, Parkinson.org, was the most-used resource. Spanish-speaking community members also highlighted online education programs, including webinars and Expert Briefings, as most helpful.

Reflecting on the resources that have been most helpful, participants also pointed out areas that were missing, or underrepresented, in their community, particularly around exercise programs and emotional health resources.

When asked about the policy issues that matter most, participants identified increasing research funding and improving the review and approval process for new treatments as top priorities.

Digital tools may help with learning, tracking symptoms and managing care, yet many participants (60–70%) said they do not know about these tools or do not use them.

Key takeaway

These findings show why it’s important to have trusted, easy-to-use resources that support learning, emotional health, connection and confidence throughout the Parkinson’s journey. Explore our blog for the latest information.

Learn more about our policy and advocacy priorities here.

What These Results Mean for Our Community

In both the English and Spanish surveys, we saw common themes:

  • People want education about symptoms and treatment options.
  • Many people need more help getting care and talking with their doctor.
  • More people are hearing about research, but few are joining studies.
  • People want trusted information and support.

These results remind us that living with Parkinson’s, caring for someone with Parkinson’s and connecting with the PD community look different for each person. Hearing directly from the community helps us keep improving our programs, education and resources.

Next Steps

The Parkinson’s Foundation will keep listening and responding to the community’s needs and priorities. We will keep working to advance our mission and make life better for everyone affected by PD.

While no single survey can capture the full range of experiences within the Parkinson’s community, the insights shared through surveys like the State of the Community Survey help guide our programs, resources, research, and advocacy efforts. That is why we continue to seek feedback in multiple ways and encourage people with Parkinson’s, care partners, and family members to join our survey initiative and participate in future surveys.

To help shape future Parkinson’s Foundation initiatives and ensure your voice is heard, consider joining our survey initiative. Learn more about our Surveys here.

Raise Awareness

Resultados de nuestra Encuesta Acerca del Estado de la Comunidad 2026

🧠 ¿Qué aprenderá en este artículo?

  • Conclusiones clave de la Encuesta Acerca del Estado de la Comunidad 2026 de la Parkinson's Foundation.
  • Cómo la Fundación utilizará los resultados de la encuesta para ayudar a dar forma a los programas y recursos.
  • Perspectivas del mundo real sobre atención, participación en investigaciones y más para la comunidad de la enfermedad de Parkinson (EP).
Pareja completando una encuesta

Cada año, la Parkinson's Foundation encuesta a la comunidad de la enfermedad de Parkinson para conocer qué temas son más importantes y qué apoyo necesitan las personas.

Los resultados de nuestra Encuesta del Estado Acerca del Estado de la Comunidad 2026 orientan los programas y recursos de la Parkinson's Foundation, asegurando que nos mantengamos enfocados en lo que más importa a las personas afectadas por la EP.

Este año, más de 9.000 personas (personas con la EP, cuidadores, familiares, amigos y profesionales de la salud) respondieron la encuesta en inglés y español, un aumento del 30 % con respecto a 2025. Las respuestas provinieron de los 50 estados y de personas fuera de los EE. UU., lo que nos brinda información valiosa sobre las experiencias y necesidades de nuestra comunidad global del Parkinson.

Resultados de nuestra Encuesta Acerca del Estado de la Comunidad 2026

A continuación se presentan los hallazgos clave de la encuesta de este año.

1. Comprender los síntomas, medicamentos y tratamientos sigue siendo una prioridad principal.

Los participantes de la encuesta continúan mencionando los síntomas motores, los síntomas no motores y el conocimiento sobre medicamentos y opciones de tratamiento como principales preocupaciones. Más de la mitad identificó los síntomas motores (61 %) y los síntomas no motores (52 %) como los más preocupantes, especialmente temblor, marcha y equilibrio, sueño, estado de ánimo y cognición.

Los participantes expresaron un gran interés en aprender más sobre el manejo de síntomas y las opciones de tratamiento. De manera similar, los miembros de la comunidad de habla hispana estaban más interesados en actualizaciones de investigación y opciones de tratamiento.

Conclusión clave

Las personas desean información clara y confiable sobre síntomas, opciones de tratamiento e investigación. Utilizaremos estos hallazgos para guiar la educación y los programas futuros.

Visite nuestra Biblioteca de la EP para explorar los temas que más le importan.

2. La incertidumbre sobre qué discutir durante las citas médicas y las barreras para la atención continúan afectando a la comunidad.

Un gran desafío durante las citas es saber qué síntomas y preguntas hacerle al médico de la EP, y muchos encuentran difícil hablar sobre la salud mental y emocional. Similar al año pasado, la mayoría de las personas dijeron que pasan de 15 a 30 minutos con su proveedor.

«Creo en la medicina narrativa, donde aliento a los pacientes a compartir su historia de Parkinson —enfocándose en los síntomas que más les afectan y trabajando juntos para crear un plan de atención personalizado que les permita asumir un papel activo». 

— Dra. Sneha Mantri,  directora médica en jefe de la Parkinson's Foundation

Aproximadamente el 25 % de los encuestados acudió a la sala de emergencias o permaneció en el hospital en el último año, y solo el 38 % conocía la Guía de seguridad hospitalaria de la Parkinson's Foundation.

Aunque la mayoría informó no tener barreras para la atención, otros dijeron que puede ser difícil obtener servicios y apoyo. En la encuesta en inglés, las barreras más comunes fueron:

  • No saber qué servicios están disponibles o cómo obtenerlos
  • Dificultad para obtener citas
  • Tener que viajar lejos para recibir atención

Para los participantes de habla hispana, el costo de los servicios fue la principal barrera, mientras que otros desafíos incluyeron el idioma, el transporte y no tener suficientes servicios disponibles.

Conclusiones clave

Las citas médicas pueden resultar abrumadoras, especialmente a medida que los síntomas cambian con el tiempo. Estos hallazgos muestran la necesidad de herramientas y recursos que ayuden a las personas a sentirse preparadas y más seguras durante las visitas de atención médica. Aprenda cómo optimizar su atención médica para el Parkinson.

Recibir atención para el Parkinson es diferente para cada persona. Comprender las barreras para acceder a atención de calidad nos ayuda a ver dónde se necesita más educación, apoyo y divulgación.

3. El conocimiento de PD GENEration está creciendo, pero persisten las brechas en la participación en investigación.

En la encuesta en inglés, la mitad de los participantes había oído hablar de PD GENEration: Impulsado por la Parkinson's Foundation, en comparación con solo el 33 % entre los miembros de la comunidad de habla hispana. Pero oír hablar de ello no siempre significa participar en el estudio. Aproximadamente el 60 % de las personas que conocían el estudio y eran elegibles participaron en PD GENEration, con una participación sustancialmente menor de hispanohablantes (32 %).

Fuera de PD GENEration, la mayoría de los encuestados dijeron que no han participado en estudios de investigación clínica.

Conclusión clave

Estos hallazgos muestran que podemos hacer más para explicar la investigación clínica y ayudar a las personas a comprender cómo participar en estudios de investigación, incluido PD GENEration.

PD Trial Navigator es un nuevo programa que ayuda a conectar a los participantes de PD GENEration con estudios relevantes, al mismo tiempo que proporciona apoyo personalizado durante todo el proceso.

4. Las personas buscan información confiable, apoyo y recursos comunitarios.

Los participantes compartieron que el sitio web de la Parkinson's Foundation, Parkinson.org, fue el recurso más utilizado. Los miembros de la comunidad de habla hispana también destacaron los programas de educación en línea, incluidos los webinars y los Expert Briefings, como los más útiles.

Al reflexionar sobre los recursos que han sido más útiles, los participantes también señalaron áreas que faltaban o estaban subrepresentadas en su comunidad, particularmente en torno a programas de ejercicio y recursos de salud emocional.

Cuando se les preguntó sobre los temas de política que más importan, los participantes identificaron el aumento de la financiación para la investigación y la mejora del proceso de revisión y aprobación de nuevos tratamientos como principales prioridades.

Las herramientas digitales pueden ayudar con el aprendizaje, el seguimiento de los síntomas y la gestión de la atención, sin embargo, muchos participantes (60–70 %) dijeron que no conocen estas herramientas o no las usan.

Conclusión clave

Estos hallazgos muestran por qué es importante contar con recursos confiables y fáciles de usar que apoyen el aprendizaje, la salud emocional, la conexión y la confianza a lo largo del recorrido con el Parkinson. Explore nuestro blog para obtener la información más reciente.

Obtenga más información sobre nuestras prioridades de política y defensa aquí.

Qué significan estos resultados para nuestra comunidad

En las encuestas tanto en inglés como en español, vimos temas comunes:

  • Las personas quieren educación sobre los síntomas y las opciones de tratamiento.
  • Muchas personas necesitan más ayuda para obtener atención y hablar con su médico.
  • Más personas están oyendo hablar de la investigación, pero pocas se unen a los estudios.
  • Las personas quieren información confiable y apoyo.

Estos resultados nos recuerdan que vivir con Parkinson, cuidar a alguien con Parkinson y conectarse con la comunidad de EP es diferente para cada persona. Escuchar directamente de la comunidad nos ayuda a seguir mejorando nuestros programas, educación y recursos.

Próximos pasos

La Parkinson’s Foundation seguirá escuchando y respondiendo a las necesidades y prioridades de la comunidad. Seguiremos trabajando para avanzar en nuestra misión y mejorar la vida de todas las personas afectadas por la EP.

Si bien ninguna encuesta puede capturar toda la gama de experiencias dentro de la comunidad de Parkinson, la información compartida a través de encuestas como la Encuesta Acerca del Estado de la Comunidad ayuda a guiar nuestros programas, recursos, investigación y esfuerzos de defensa. Por eso seguimos buscando comentarios de múltiples maneras y alentamos a las personas con Parkinson, los cuidadores y los familiares a unirse a nuestra iniciativa de encuestas y participar en futuras encuestas.

Para ayudar a dar forma a las futuras iniciativas de la Parkinson’s Foundation y asegurarse de que su voz sea escuchada, considere unirse a nuestra iniciativa de encuestas. Obtenga más información sobre nuestras encuestas aquí.

My PD Story

Karen Ann Stroud
People with PD

Karen Ann Stroud

My Parkinson’s journey began in 2021. Like many people, I didn’t fully understand what the diagnosis would mean for my future. There were moments of fear, uncertainty, and grief as I realized that everyday things I once took for granted might become more difficult. 

Fatigue, stiffness, and slowing down physically were some of the first signs I noticed. But over time, I realized Parkinson’s disease (PD) was going to change parts of my life — not take away who I am.

I am a wife, a mom of five, a grandmother, a friend, and someone who still finds joy in life’s simple moments. Parkinson’s has taught me to slow down, appreciate the little things, and celebrate victories that may seem small to others. Some days are harder than others, but I’ve learned that joy is still a choice.

One of the biggest blessings in my journey has been community. I became involved with Moving Day Sacramento and created a team called Grace & Grit. That name represents exactly how I try to live my life now — rooted in grace and fueled by grit. Walking alongside others who understand Parkinson’s has reminded me that none of us are alone in this fight.

Through PD GENEration, I participated in a PD research study for the first time. The genetic testing process was very easy and straightforward. I provided a sample, and once the results were available, I was contacted by a genetic counselor who took the time to explain everything to me clearly and compassionately.

Karen Ann Stroud with her husband

Through PD GENEration, I learned that my Parkinson’s is genetic, which gave me some answers but also left me with questions. Unfortunately, because both my parents passed away, I do not know whether the gene came from my maternal or paternal side of the family. At this time, no one else in my family has been diagnosed with Parkinson’s, which makes the diagnosis feel somewhat unexpected for our family.

I shared my results with my family because I want my children to have all the information.

What keeps me hopeful is my family, especially my children and grandchildren. I want them to see that strength does not always look loud or dramatic. 

Sometimes strength simply means showing up, putting one foot in front of the other, and continuing to live life with purpose and hope.

If I could give advice to someone newly diagnosed with Parkinson’s, it would be this: don’t let the diagnosis define you. Allow yourself time to process it, but don’t lose sight of the person you were before PD. Stay active, stay connected, ask for support when you need it, and keep finding things that bring you joy.

Parkinson’s has changed my life, but it has also shown me the incredible power of resilience, friendship, and community. Every step truly matters.

Learn more about ongoing Parkinson’s research and how to join a study today.

My PD Story

Chris Kustanbauter
People with PD

Chris Kustanbauter

A Walk That Changed Everything

While on vacation in August 2010, my wife Mary and I had just finished a walk when my left hand began shaking. Mary insisted I go to the emergency room (ER), and after an examination, the ER physician attributed it to stress.

Yet back home, the tremor in my left hand persisted. I also began dragging my left leg when I walked, and my left arm didn’t swing when walking. I managed to secure an appointment with a neurologist about two months later. 

After several rounds of tests, he told me, “I think you have Parkinson’s.” He referred me to a Movement Disorders Specialist at the University of Maryland, who confirmed that I had Young-Onset Parkinson’s Disease (YOPD) at age 46.

Taking Control: My Four Pillars

After the initial shock, I decided I was going to take control of my Parkinson’s journey. Drawing on my background in science and clinical research, I spent two months reviewing clinical studies on Parkinson’s and exploring the resources available on the Parkinson’s Foundation website.

From that research, I distilled four key pillars I would focus on to live my best life with Parkinson’s:

  • Exercise: Daily aerobic activity, strength training, flexibility and stretching, and balance training—all grounded in Parkinson’s Foundation recommendations.
  • Nutrition: A consistent, healthy eating plan to support overall well-being.
  • Optimism & Mindfulness: Maintaining a positive attitude and practicing mindfulness to navigate daily challenges.
  • Social Interaction: Staying connected, joining a Parkinson’s exercise group at my local community center and building new friendships.

Giving Back: Teaching, Research, and Advocacy

Living an exceptional life with Parkinson’s, I felt compelled to help others and share what I had learned. I began presenting to support groups but still felt I could contribute more. 

When I came across the Research Advocate role on the Parkinson’s Foundation website, I knew it was the right fit. I completed the training and became a Parkinson’s Foundation Research Advocate in September 2024.

In 2024, I learned that three of my former neighbors had developed Parkinson’s. For 20 years, I lived in a neighborhood just one-quarter of a mile from a golf course that had been built and opened during that time. Nearby farm fields grew corn and soybeans. Strikingly, four households within a small, concentrated radius—mine included—all had someone develop Parkinson’s.

This felt like far more than coincidence. After researching possible causes, I found that people living near a golf course are twice as likely to develop Parkinson’s as those who do not likely due to the pesticides and herbicides used to control weeds and insects 

I learned that one of those herbicides called paraquat is linked to an increased risk of developing Parkinson's. Paraquat is banned in more than 70 countries, including the European Union and China, yet it remains in use in the U.S.

This information drew me into public policy advocacy. In February 2026, I joined the Parkinson’s Foundation and other advocacy organizations at the Pennsylvania State Capitol to share our stories and urge them to support a bill to ban paraquat in the state. Most were receptive to our concerns — with one lawmaker agreeing to sign on as a co-sponsor. 

My Parkinson’s journey has taught me to fight back with exercise and social interaction, advocate for others, and a Parkinson’s diagnosis is not an ending but an opportunity to live your best life. 

Learn more about how Policy work can impact the lives of people with Parkinson’s. Visit our Advocacy Center to take action in your state now.

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.

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