Policy & Advocacy

3 Takeaways from the First National Parkinson’s Project Advisory Council Meeting

🧠 What will you learn in this article?

This article shares key takeaways from the first meeting of the National Parkinson’s Project Advisory Council and explains what it means for the future of Parkinson’s disease (PD) policy. It highlights how:

  • The Council is beginning its work on the first-ever national plan to better diagnose, treat, prevent and cure Parkinson's.
  • The Parkinson's community's years of advocacy made this historic moment possible.
  • There are concrete ways you can stay involved and help shape what comes next.
United States Capitol Building

On June 29, the National Parkinson’s Project Advisory Council held its first meeting, a milestone that was years in the making and a turning point for the Parkinson’s community. 

The Council brings together Parkinson’s experts, government officials, care partners, advocates and people living with Parkinson's disease (PD) to develop the first-ever national plan to better diagnose, treat, prevent and ultimately cure Parkinson's. Michael S. Okun, MD, National Medical Advisor to the Parkinson's Foundation, was appointed to the Council, helping ensure the National Plan to End Parkinson's reflects both scientific expertise and lived experience.

This moment did not happen on its own. It is the result of years of advocacy by people like you. Advocates shared their experiences with Congress to push for the creation of this initiative in 2024. And less than a month after hundreds of advocates went to Capitol Hill this spring urging action on the National Parkinson's Project, the Council was finally seated.

Now the real work begins — and so does our responsibility to keep up the momentum. The Parkinson's Foundation is urging the Council to:

  • Issue its first annual report within one year.
  • Prioritize an estimate of the federal funding needed to address Parkinson's. 
  • Make actionable recommendations to improve care for people living with PD across the lifespan.

What came out of this first meeting? Here are three takeaways:

1. The Council Acknowledged the Urgency to Act

From the outset, leadership from the National Institute of Neurological Disorders and Stroke set a tone of urgency, recognizing that the initiative's initial deadlines had been missed and emphasizing the need for actionable recommendations without further delay. 

Encouragingly, the Council indicated that a report would be delivered in summer 2027, which aligns with our ask that the Council produce its first report within one year. For a disease where there is no time to waste, that commitment to a timeline matters.

2. The Council Acknowledged More PD Resources Are Needed for Care and Research

To meaningfully address Parkinson's, we first need to understand the full costs of the disease — across research and care. The Parkinson's Foundation has been pushing for the Council to develop an estimate of the federal funding needed to prevent, diagnose, treat and ultimately cure Parkinson's, as well as the investment required to improve quality of life for those living with PD today. 

In this first meeting, the Council acknowledged the importance of creating an estimate as they continue their work. This is an important step: a clear picture of what it will take gives Congress the roadmap it needs to determine funding levels and spur meaningful investment.

3. The Parkinson’s Community Showed Up in Force

The energy and public engagement were unmistakable; more than 160 comments were submitted for this first meeting. Ken Chason,  People with Parkinson's Advisory Council Vice Chair and person living with PD, was one of 10 people recognized to present. 

“The Parkinson’s crisis is real and urgent,” Ken wrote in his testimony. “More than 1.1 million Americans have the disease, with approximately 90,000 new diagnoses each year. Parkinson’s is relentlessly progressive, devastating patients and families alike, and is on track to further strain our healthcare system. To fully understand the challenge and chart a way forward, it is essential to hear from people who live with Parkinson’s every day. As the Council begins its work, I urge it to keep the experiences of those living with Parkinson’s in mind.”

Ken drew on his own diagnosis journey to spotlight the community's top priorities: produce the overdue report within one year; identify the resources needed to prevent, diagnose, treat and ultimately cure Parkinson's; and prioritize recommendations to improve access to high-quality care. It was a powerful reminder of what the community can accomplish when it speaks with one voice.

Your Voice Can Shape What Comes Next

The first meeting is only the beginning. The decisions this Council makes over the coming months and years will shape Parkinson's research, care and quality of life for generations. 

The Parkinson's community making its voice heard is critical in making sure the Council  delivers results. You helped create the National Parkinson's Project. Now you can help see it through.

Ready to make a difference? Visit our Advocacy Center to join our Advocacy Network, contact your representatives and take action on the issues that matter most to the PD community today.

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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:

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

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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.

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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.

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.

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. 

 
Podcasts

Episode 191: Speaking with Intention

Changes in speech and swallowing are common in Parkinson’s disease (PD), but they can be difficult to recognize without understanding how they may present. These changes often happen because of lower dopamine levels in people with PD, which can make automatic actions- like speaking loud, clear sentences without requiring much thought- more difficult.  

Parkinson Voice Project developed the SPEAK OUT! Therapy Program to help people with PD speak and swallow with intention, addressing these challenges. 

In the episode, we speak with Samantha Elandary, MA, CCC-SLP, President and Chief Executive Officer of Parkinson Voice Project. She discusses the benefits of working with a Certified SPEAK OUT! Provider, how to identify signs of speech and swallowing difficulties, and offers tips for incorporating these techniques into daily life. Toward the end of the episode, Samantha demonstrates a brief speech exercise that takes just a few minutes but can provide meaningful benefits when practiced consistently and intentionally. 

Released: May 12, 2026

Science News

New Molecule Designed to Block the Protein Buildup Behind Parkinson's

🧠 What will you learn in this article?

This article highlights a new study that found a potential way to treat the underlying cause of Parkinson’s disease, not just its symptoms. It discusses how:

  • In the brain, the abnormal clumping and spread of a protein called alpha-synuclein leads is tied to Parkinson’s. Current therapies address PD symptoms, not this process.

  • Researchers developed SK-129, a molecule that can stop these clumps from forming and spreading in various models of Parkinson’s.

  • In different models, SK-129 saved dopamine neurons and improved outcomes — protecting neurons even after damage began and boosting mouse survival while preventing movement impairment and brain inflammation.

Parkinson's Foundation Science News blogs

In Parkinson’s disease (PD), a protein called alpha-synuclein misfolds and clumps together inside brain cells. These clumps are thought to damage neurons over time and can spread from cell to cell, driving the disease forward. Currently, treatments for PD only manage symptoms — none can slow or stop this underlying process.

Scientists are working hard to find disease-modifying therapies for Parkinson’s. A new study published in Science Translational Medicine may offer a path forward. Researchers at the University of Denver and NYU Abu Dhabi — co-led by Sunil Kumar, PhD, a Parkinson's Foundation Stanley Fahn Junior Faculty Awardee — have developed a special molecule called SK-129 that shows promise in blocking alpha-synuclein from clumping and spreading in the brain. The Parkinson’s Foundation directly funded this work.

Think of alpha-synuclein clumping like a chain reaction: one misfolded protein causes the next one to misfold, and so on, eventually building up harmful deposits. SK-129 is designed to interrupt that chain reaction before it gets started.

Because the SK-129 molecule interacts with important regions of alpha-synuclein, it can latch onto the misfolded protein and prevent it from recruiting others into clumps. Importantly, it targets the toxic, clumped forms of the protein rather than the healthy form, which has normal functions in the brain.

What is SK-129 and how does it impact Parkinson’s?

In Parkinson's, a protein called alpha-synuclein clumps inside brain cells.

                                                                 ➡️

These clumps are thought to damage neurons and spread, making PD symptoms worse over time.

                                                                 ➡️

Researchers developed a molecule called SK-129 that can stop these clumps from forming and spreading — stopping a chain reaction before it starts.

“Our study is unique in that it targets the most toxic forms of α-synuclein — oligomers — offering a new way to significantly slow disease symptoms. This approach creates hope for disease-modifying therapies not only for Parkinson’s, but also for related disorders like Lewy body dementia. That gives us real hope that disease-modifying therapies for Parkinson’s are within reach.”

- Dr. Kumar, study lead and Parkinson’s Foundation research grantee

Key advantages of SK-129 are its size and shape. Other strategies to block alpha-synuclein clumping, such as antibodies, are large molecules that struggle to cross the blood-brain barrier (the protective layer between the bloodstream and the brain). SK-129 is small and compact enough to cross this barrier. Additionally, once in the brain, the molecule was able to stay there for multiple days, which is essential for sustained treatment.

Study Results

The research team tested SK-129 across a remarkably wide range of models — from human cells and patient-derived tissue to worm and mouse models of PD.

In worm models of PD, untreated worms lost most of their dopamine-producing neurons over time. Worms treated preventatively with SK-129 retained nearly all of them, along with restored movement and behavior. Critically, SK-129 may be more than a preventive measure. When given after disease had already set in — after about 30% of dopamine neurons had already been lost — it still rescued a significant number of remaining neurons. This is important because people with Parkinson’s are typically diagnosed after symptoms have already appeared.

In a mouse model of PD, untreated mice survived an average of about 175 days, with fewer than 20% surviving to 270 days. Those that survived showed severe movement problems. In contrast, mice treated with SK-129 had 100% survival to 270 days and showed no signs of movement impairment. Brain tissue from treated mice showed no harmful protein deposits or signs of brain inflammation.

To test the molecule in human samples, the researchers tested SK-129 using exosomes — tiny cellular packages — isolated from the blood of people with Parkinson’s. These exosomes carried misfolded alpha-synuclein that could trigger clumping in cells grown in a petri dish. Adding SK-129 blocked this process.

Another interesting finding was that SK-129 also blocked alpha-synuclein from clumping together with tau, a protein linked to Alzheimer’s disease. Tau is increasingly recognized as being important in Parkinson’s too; about half of people with PD also have tau-related brain changes, which can worsen both movement and cognitive symptoms. In the mouse model, treated mice showed no evidence of combined alpha-synuclein and tau deposits, while untreated mice did. In short, while SK-129 is designed to target harmful alpha-synuclein deposits, it also prevented alpha-synuclein from clumping with tau as well.

Highlights

  • Researchers developed a molecule, called SK-129, that can make it to the brain and attach to toxic forms of the protein associated with Parkinson’s called alpha-synuclein.

  • SK-129 latches onto the hallmark PD protein and prevents it from launching a clumping chain reaction.

  • In multiple models of PD (including cells, worms, mice and human-derived tissue), treatment with SK-129 prevented alpha-synuclein clumping and rescued signs of neurodegeneration.

  • SK-129 shows promising therapeutic properties, including the ability to effectively reach the brain, preferentially bind to toxic forms of alpha-synuclein, and remain in brain tissue for a prolonged period of time.

What Does This Mean?

While early, SK-129 has the potential to be a breakthrough Parkinson’s treatment. This study represents an important step toward a long-sought goal: a disease-modifying treatment that addresses the underlying cause of Parkinson’s disease instead of only symptoms.

This research supports a promising strategy at the forefront of Parkinson’s research: targeting the clumping and spread of alpha-synuclein, a suspected driver of PD progression. Earlier approaches have struggled because they were not specific enough, couldn’t enter the brain or didn’t last long enough in the brain to be effective.

Importantly, SK-129’s unique features have overcome many of these challenges, making it a promising potential therapy. Despite this progress, SK-129 still needs thorough safety testing and studies in more complex models before clinical trials can begin, so it will likely be years before it is available. This is why funding a diverse range of Parkinson’s research studies is so important.

What Do These Findings Mean for People with Parkinson’s Right Now?

SK-129 is not yet a treatment available to people. It is still in the preclinical stage, with next steps already underway.

“Next, we’ll move SK-129 toward clinical development by testing its safety and dosing,” said Dr. Kumar. “A key priority is to establish a clear link between dose, effectively targeting the harmful alpha-synuclein and producing real benefits in animal models. At the same time, we are optimizing related molecules to improve strength, access to the brain and stability, to help identify the best candidate for future clinical trials.” 

For people with Parkinson’s, continue current care — medications, exercise, therapy) — and consider clinical trials if interested. While SK-129 is likely years away from human testing, the development of molecules like this represents meaningful progress and demonstrates the importance of supporting preclinical Parkinson’s research.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD treatments and ongoing research through our resources below, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.

Advancing Research

Inside the Science: Parkinson's Research Today

🧠 What will you learn in this article?

This article highlights three key Parkinson’s research areas scientists are exploring right now. It discusses:

  • How Parkinson’s research is accelerating because there’s no cure, cases are rising globally and the U.S. economic burden is significant.

  • Three especially active research targets are alpha-synuclein protein aggregation, mitochondrial dysfunction and brain inflammation — and how they interact.

  • New tools are underway to help with earlier and more precise detection, better tracking of progression and moving toward personalized, disease-modifying treatments.

Team of scientists in a lab

Parkinson’s disease (PD) research is advancing rapidly, with breakthroughs on the horizon that could transform treatment and offer hope to millions.

Three key research areas are among the most active and promising: alpha-synuclein aggregation, mitochondrial dysfunction and neuroinflammation. Learn what these terms mean, where the science is headed and how advances in these areas may lead to new treatments and disease-modifying therapies.

This article is based on a Parkinson’s Foundation Expert Briefing exploring advances in Parkinson’s research hosted by Laurie Sanders, PhD, Associate Professor, Neurology and Pathology, Movement Disorders and Translational Brain Sciences divisions, at Duke University School of Medicine, a Parkinson's Foundation Center of Excellence.

Urgency is Driving Research

The pressing need to crack the code behind the causes of Parkinson’s has never been greater. Though there are a wide variety of treatments to manage PD symptoms, there is no cure. More than 11 million people worldwide are living with Parkinson’s, including more than 1 million in the U.S.

PD cases are expected to exceed 25 million globally by 2050. The economic impact is staggering: Parkinson's cost the U.S. $82.2 billion in 2024. More than $23 billion went toward direct medical costs, while nearly $60 billion reflects indirect costs, including lost income and burdens on care partners.

The determination to solve the Parkinson’s mystery is possibly best reflected in the number of current studies in the research pipeline. The National Institutes of Health’s (NIH) ClinicalTrials.gov shows more than 200 Parkinson’s-related clinical trials either actively recruiting or about to recruit. In addition, foundational research that advances our overall understanding of Parkinson’s biology continues to take place, especially in the following areas.

3 Key Parkinson’s Research Areas Right Now

Parkinson’s is complex, as scientists believe a combination of environmental and genetic factors are the cause of Parkinson's. Research requires attacking the problem from multiple angles. Studies suggest the development and progression of Parkinson’s involves interactions among three key biological areas:

1. Protein Aggregation: Alpha-synuclein

Parkinson’s involves the loss of dopamine-producing neurons and a buildup of alpha-synuclein, a normally useful protein found in the brain that helps brain cells communicate. There is very strong genetic evidence linking alpha-synuclein to Parkinson’s disease via the SNCA gene, which was the first PD-associated gene to be identified.

Alpha-synuclein becomes problematic when it misfolds, gathering into clumps called Lewy bodies that can spread between brain cells. Many PD treatments target and remove these alpha-synuclein clumps. However, while Lewy bodies are a hallmark of Parkinson’s, there is still some controversy over whether they are part of the Parkinson’s problem or act as a protective factor.

2. Mitochondrial Dysfunction

Mitochondria are energy powerhouses that are critically important to good health. They malfunction in Parkinson’s, impacting cellular energy and contributing to cell death. Neurons — brain cells that send electrical and chemical communications — are especially vulnerable to mitochondrial dysfunction.

Certain gene mutations can impact mitochondrial function, as can environmental toxins like pesticides (such as paraquat).

Genetic risk factors, including PINK1 and PRKN that are specifically related to mitochondria, can also influence PD development and severity.

3. Brain Inflammation

When combined with the other two factors, studies suggest that brain inflammation (the brain’s protective response to harm, which may become overstimulated in Parkinson’s) can make those problems worse. In addition, inflammation can weaken the blood-brain barrier that may allow immune cells from the blood to enter the brain, which can accelerate neurodegeneration.

Advances Accelerating Parkinson’s Research

Once considered solely a movement disorder, we now know Parkinson’s is a multisystem disease that can affect the whole body — including urinary problems, gut issues and changes to thinking, sleep and mood.

Patient engagement is essential for PD research progress. Major influences that deepen our understanding of PD risk include studies with global reach like PD GENEration: Powered by the Parkinson’s Foundation, which is providing insights as to how Parkinson’s is tied to genetics through providing genetic testing and counseling to people with a confirmed PD diagnosis. Importantly, the biological discoveries made about Parkinson’s via genetic testing may also apply to Parkinson’s cases that do not have a known genetic link.

New tools are being developed that hold the possibility to detect Parkinson’s earlier, better understand its progression and help track the effectiveness of PD therapies. These tools include:

  • Brain imaging to help researchers visualize the spread of Parkinson’s, identify specific areas of brain pathology and increase diagnosis accuracy including advances in developing positron emission tomography (PET) ligands, high-resolution MRI and diffusion imaging.

  • Ultrasensitive lab tests to measure new Parkinson’s biomarkers from spinal fluid and other fluids such as blood. These tests include:

    • alpha-synuclein seeding assays (SAAs) to detect tiny amounts of misfolded alpha-synuclein.

    • tests that can identify neurodegeneration, such as for the protein neurofilament light, which has been linked to PD, and other markers of inflammation.

    • Tests for mitochondrial DNA damage, such as MitoDNADX, a recent blood test developed by Duke University researchers for use as a potential biomarker in PD.

  • Improved disease models, including:

    • induced pluripotent stem cells (iPSCs), developed by recoding cells from people with PD to become dopamine neurons, allowing for the study of PD-related cell dysfunction in patient tissue. 

    • organoids, which are miniature brains that allow scientists to study Parkinson’s mechanisms and test possible therapies.

    • refined animal models, that are genetically engineered to better model Parkinson’s symptoms.

Research Breakthroughs and Targets

Scientists are investigating ways to slow or halt Parkinson’s, identify people for participation in relevant PD trials and deliver targeted treatments.

Nearly 100 forms of alpha-synuclein have been identified, with research to determine which are most toxic. As scientists dig deeper into PD progression, they have also discovered alpha-synuclein pathology along the GI tract of people with PD.

Parkinson’s and GI research is expanding, including through the Gut-Brain Communication in Parkinson’s Disease Consortium, a joint effort between the NIH and the Duke Clinical Research Institute.

Many people with Parkinson’s also experience the buildup of other proteins such as Beta-amyloid plaques and Tau tangles, key hallmarks of Alzheimer’s disease. One promising study under way is exploring whether oral therapy buntanetap is safe for long-term use in people with PD. Buntanetap aims to reduce other toxic proteins. Investigational Parkinson’s treatments also include immunotherapies that use antibodies to target harmful protein clumps and approaches that help cells manage or remove misfolded proteins.

Mutations in the GBA1 gene, a common genetic risk factor for Parkinson’s, reduce the activity of the glucocerebrosidase enzyme, contributing to alpha-synuclein buildup. New treatments are being developed to boost glucocerebrosidase activity to help cells more effectively remove harmful buildup. A variety of therapies are also in the research pipeline to rescue mitochondrial function.

The Way Forward

Parkinson’s research is fundamental for progress toward new disease-modifying therapies that can slow or stop disease progression. By improving our understanding of the ways in which alpha-synuclein, mitochondrial dysfunction and inflammation interact, we get closer to having personalized, precision-medicine treatments for PD. When we combine this knowledge with patient participation in research, breakthroughs in technology and new biomarker discoveries, we continue to advance closer to a cure for Parkinson’s.

How to get involved:

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