Exercise is now clearly recognized as a key part of the Parkinson's treatment plan. It is a core component of comprehensive Parkinson's care and a potential disease-modifying intervention. Learn about new exercise research focusing on high vs moderate intensity, domains of exercise, and implementation strategies for people with Parkinson's.
Featuring special guests: Jimmy Choi and Daniel Corcos, PhD with moderator, Sneha Mantri, MD, MS, FAAN.
In this session, we will learn how to notice common difficult habits of the mind, to pause, and then to mindfully return to a better place. As we do so, we give ourselves the best chance of choosing a better next step.
Experts will share practical strategies and safety precautions to improve safety and minimize fall risk to support balance and mobility in everyday life.
Georgia Chapter Ambassador Retreat | July 31–August 1, Atlanta, GA. Join fellow Parkinson’s Foundation ambassadors for a weekend of connection, learning, collaboration, and planning as we celebrate our impact and prepare for the year ahead.
Check-in & Resource Fair* begins at 11:00 a.m. and the program starts at 11:30 a.m.
Exercise is a powerful tool for managing Parkinson’s disease symptoms at every stage. This program explains how staying active supports movement, mood, and thinking- and may even slow disease progression. Participants will learn practical ways to build exercise into daily life for better mobility and overall well-being.
Speakers
Sara Hooshmand, MD Tonya Bernard, DPT Amanda Mower, DPT
Lunch will be served. Parking available on site.
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.
In this session, we will learn how to notice common difficult habits of the mind, to pause, and then to mindfully return to a better place. As we do so, we give ourselves the best chance of choosing a better next step.
Experts will share practical strategies and safety precautions to improve safety and minimize fall risk to support balance and mobility in everyday life.
Georgia Chapter Ambassador Retreat | July 31–August 1, Atlanta, GA. Join fellow Parkinson’s Foundation ambassadors for a weekend of connection, learning, collaboration, and planning as we celebrate our impact and prepare for the year ahead.
This program offers an introduction and basic overview of Parkinson’s disease (PD). PD varies from person to person and changes over time. Discover its causes, common symptoms, available treatments and effective strategies for managing them. Learn practical daily living tips to empower you to take charge of your health and to navigate the challenges of living with PD.
Speaker
Rozena Davis, APRN-CNP The Ohio State University Wexner Medical Center A Parkinson's Foundation Center of Excellence
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.
In this session, we will learn how to notice common difficult habits of the mind, to pause, and then to mindfully return to a better place. As we do so, we give ourselves the best chance of choosing a better next step.
Experts will share practical strategies and safety precautions to improve safety and minimize fall risk to support balance and mobility in everyday life.
Georgia Chapter Ambassador Retreat | July 31–August 1, Atlanta, GA. Join fellow Parkinson’s Foundation ambassadors for a weekend of connection, learning, collaboration, and planning as we celebrate our impact and prepare for the year ahead.
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.
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.
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.
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.
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).
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.
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.
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.
The Parkinson's Foundation is a charity partner for the 2026 Athens Marathon. By signing up to run as a Parkinson's Champion you commit to raising funds and awareness for the Parkinson's Foundation, and in return you get access to a free entry (bib) to the race in addition to tons of other fun benefits and perks. You can apply to run now through our realbuzz application.
Fundraising Commitments: • Marathon - $4,000
History brought to life; the Athens Marathon is the original marathon finishing in the legendary stadium where the first Olympic games of the modern era took place in 1896. The route boasts such famous heritage sites as the Marathon Tomb and attracts runners from all over the world to be part of history. Sold out for general entry in less than 36 hours - secure your spot on the start line with us! Please note, there is a time limit of 8 hours.
In this session, we will learn how to notice common difficult habits of the mind, to pause, and then to mindfully return to a better place. As we do so, we give ourselves the best chance of choosing a better next step.
Experts will share practical strategies and safety precautions to improve safety and minimize fall risk to support balance and mobility in everyday life.
Georgia Chapter Ambassador Retreat | July 31–August 1, Atlanta, GA. Join fellow Parkinson’s Foundation ambassadors for a weekend of connection, learning, collaboration, and planning as we celebrate our impact and prepare for the year ahead.
The Parkinson's Foundation is a charity partner for the 2026 Irish Life Dublin Marathon. By signing up to run as a Parkinson's Champion you commit to raising funds and awareness for the Parkinson's Foundation, and in return you get access to a free entry (bib) to the race in addition to tons of other fun benefits and perks. You can apply to run now through our realbuzz application.
Fundraising Commitments: • Marathon - $4,000
With its iconic route past Dublin’s most famous landmarks, a relatively flat course and optimum running temperatures, the Irish Life Dublin Marathon is unmissable. Known as the friendliest marathon, thousands of spectators take to the streets to cheer you on and show the power of support. It's the only marathon to traverse Dublin city centre - join over 22,000 runners in 2026 and make your miles mean more. Plus, all charity runners get access to the exclusive realbuzz finisher party for free!
In this session, we will learn how to notice common difficult habits of the mind, to pause, and then to mindfully return to a better place. As we do so, we give ourselves the best chance of choosing a better next step.
Experts will share practical strategies and safety precautions to improve safety and minimize fall risk to support balance and mobility in everyday life.
Georgia Chapter Ambassador Retreat | July 31–August 1, Atlanta, GA. Join fellow Parkinson’s Foundation ambassadors for a weekend of connection, learning, collaboration, and planning as we celebrate our impact and prepare for the year ahead.
Check-in and Resource Fair opens at 9:30am. Program beings at 10am.
Many people with Parkinson's disease experience thinking changes such as trouble focusing, multitasking, or finding the right words. These changes, along with memory loss, can be frustrating for both the person with Parkinson's and those close to them. Learn more about these changes as well as tips to help with daily tasks, treatment options and resources for emotional and social support.
Speakers
Praveen Dayalu, MD University of Michigan Health, a Parkinson's Foundation Center of Excellence
Karen Kluin, MS, CCC (Certificate of Clinical Competence in Speech-Language Pathology), BC-ANCDS (Board Certified in Neurologic Communication Disorders) Supervisor, Speech-Language Pathology Michigan Medicine-University of Michigan Clinical Assistant Professor of Neurology University of Michigan Medical School
Erin Cecchi, LMSW Movement Disorders Program University of Michigan Health, a Parkinson's Foundation Center of Excellence
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.
In this session, we will learn how to notice common difficult habits of the mind, to pause, and then to mindfully return to a better place. As we do so, we give ourselves the best chance of choosing a better next step.
Experts will share practical strategies and safety precautions to improve safety and minimize fall risk to support balance and mobility in everyday life.
Georgia Chapter Ambassador Retreat | July 31–August 1, Atlanta, GA. Join fellow Parkinson’s Foundation ambassadors for a weekend of connection, learning, collaboration, and planning as we celebrate our impact and prepare for the year ahead.
I was diagnosed in 2017 with Parkinson’s disease (PD) after relocating to Gilbert, AZ with my family from South Brunswick, NJ. I suspect that balance issues I have had for a longer period was actually attributed to PD. My challenges with PD have been primarily with balance and walking, low blood pressure and leg pain.
For approximately a five-year period I relied on Rock Steady Boxing classes to provide the exercise my body needed to offset my physical challenges.
During the past four years I have served as a member of the Parkinson's Foundation Southwest Chapter board. This provided me with the opportunity to contribute time following my retirement in 2019 from JPMorgan Chase to help with fundraising, community outreach and board development activities.
Parkinson’s Foundation Chapters provide local resources, support groups, classes and educational programs.
I leverage the love and support of my family to stay positive and strong, as I continue to face my PD challenges. Continuing with a regular exercise routine should always be part of my health maintenance program. Also, I have always found keeping a good sense of humor as a strong defense against stress and mental health challenges.
My advice to a PD "newbie" is to utilize the vast amount of information available on Parkinson.org to educate yourself and remain informed on PD overall.
I would encourage them to be part of a PD community or support group, for there is strength in numbers and value in shared knowledge and experiences.
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.
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.
