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

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

RESEARCH FINDINGS

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

SEE ALL RESEARCH POSTERS

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

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

These include:

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

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

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

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

Main takeaways:

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

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

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

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

Main takeaways:

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

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

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

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

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

Main takeaways:

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

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

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

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

Main takeaways:

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

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

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

  

CARE FINDINGS

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

SEE ALL CARE POSTERS

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

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

Main takeaways:

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

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

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

Learn more about our Policy Priorities

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

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

Main takeaways: 

• The Parkinson’s Foundation is actively working with more than 50 Health Systems to improve care for people with Parkinson’s in their hospitals. 

• We are raising awareness and building partnerships to continue to expand our reach. 

• We are funding and leading research projects to show how negative hospital outcomes can be addressed through specific solutions designed to improve hospital care for people with PD.  

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

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

Main takeaways:

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

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

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

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

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

Main takeaways:

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

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

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

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

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

Main takeaways:

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

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

  

EDUCATION FINDINGS

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

SEE ALL EDUCATION POSTERS

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

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

Main takeaways: 

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

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

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

• Use the form now

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

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

Main takeaways:

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

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

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

Main takeaways:

• The Parkinson’s Foundation and VA have:

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

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

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

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

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

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

Main takeaway:

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

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

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

Main takeaways:

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

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

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

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

Los miembros hispanos y latinos de la comunidad de la enfermedad de Parkinson (EP) a menudo enfrentan desafíos distintos para vivir bien con Parkinson, incluidas las barreras del idioma, el acceso limitado a la atención médica y las brechas en los materiales educativos culturalmente alineados.

La Parkinson's Foundation reconoce estas disparidades y trabaja activamente para hacer que la atención médica de calidad sea más accesible para todas las personas con Parkinson, en parte a través de nuestro programa de subvenciones comunitarias.

El programa de subvenciones comunitarias de la Parkinson's Foundation apoya a grupos locales en todo Estados Unidos en la mejora de la salud, el bienestar y la educación para las personas que viven con Parkinson. Desde 2011, la Fundación ha invertido más de $12.7 millones en casi 1,000 programas comunitarios.

Conozca a continuación a cinco de nuestros beneficiarios de subvenciones comunitarias, premiados por sus programas educativos, de ejercicio y para cuidadores adaptados y creados para las comunidades de la EP de habla hispana.

Conozca a Irving Vega, PhD: mejoras en el acceso a la educación y los recursos en español en el oeste de Michigan

Irving Vega, PhD, profesor asociado distinguido Red Cedar en Michigan State University, recibió una subvención comunitaria en 2025 para comprender y abordar mejor las necesidades únicas de las comunidades hispanas y latinas en el oeste de Michigan —poblaciones históricamente subrepresentadas en la educación e investigación de la EP.

Como parte de esta subvención, realizó una encuesta comunitaria para evaluar el conocimiento sobre la EP y encontró las siguientes brechas:

• Aunque la exposición a pesticidas es un riesgo ambiental bien establecido para la EP, muchos miembros de la comunidad latina no lo identificaron como un factor de riesgo.
• Solo el 16.9% identificó el sexo masculino como un factor de riesgo, a pesar de que los hombres tienen un mayor riesgo de padecer la EP.
• La mayoría de los encuestados dependen de los médicos como su fuente principal de información (63.6%), pero el 62% informó no saber qué recursos relacionados con la EP están disponibles localmente.

Estos hallazgos destacaron una necesidad urgente de educación accesible y culturalmente adaptada. En colaboración con SABER (Supportive Alliance for Brain Education and Research), el Dr. Vega trabaja junto con socios comunitarios de confianza —Hispanic Center of West Michigan, Latin Americans United for Progress y Exalta Health— para llevar conocimientos sobre la EP que sean lingüística y culturalmente relevantes directamente a las personas que lo necesitan.

La subvención comunitaria de la Parkinson's Foundation hizo posible que el Dr. Vega implementara un modelo multifásico impulsado por la comunidad que de otro modo no habría sido factible, enfocado en:

• Escuchar a la comunidad
• Cocrear educación con organizaciones comunitarias
• Desarrollar la capacidad comunitaria mediante la capacitación del personal en las organizaciones asociadas
• Coorganizar eventos de aprendizaje comunitarios que reúnen a familias, cuidadores y adultos mayores en espacios comunitarios de confianza

Conozca a Beatriz Arguezo-González, RN: ampliación de un programa de talleres para aumentar la conciencia sobre la EP en Chicago

Basándose en la necesidad de educación accesible, el equipo de Chicago Hispanic Health Coalition, junto con FUERZA (Familias Unidas: Empoderando y Reforzando contra la Enfermedad de Parkinson), se enfoca en las necesidades únicas de los cuidadores.

Ofrecen talleres para ayudar a los miembros de la comunidad a comprender mejor la EP, navegar recursos en línea confiables y ayudarlos a prepararse para hablar con su médico de atención primaria.

La subvención comunitaria de la Parkinson's Foundation, otorgada en 2025, apoya la expansión de su programa de talleres, Door 2 Door, extendiendo su alcance comunitario con recursos y apoyo sobre la EP.

Al expandirse a una plataforma virtual, el Chicago Health Coalition ha alcanzado a más participantes que pueden unirse desde casa. El Chicago Health Coalition además ofrece talleres presenciales y conecta a los participantes con un trabajador de salud comunitario para apoyo. La Coalition también tiene como objetivo proporcionar a los cuidadores herramientas para abogar por una mejor atención para ellos mismos y sus seres queridos que conviven con la EP.

Conozca a Gemma Moya-Galé, PhD: fortalecimiento de la comunidad mediante grupos de apoyo en español

Una manera importante en que las personas con Parkinson encuentran comunidad y alivio es mediante grupos de apoyo donde las personas se reúnen y comparten sus experiencias, escuchan a sus pares y expresan emociones que las personas sin la EP pueden no comprender.

Gemma Moya-Galé, PhD, profesora asistente en Columbia University en Nueva York y beneficiaria de una subvención comunitaria en 2025, ofrece grupos de apoyo interdisciplinarios mensuales, llamados Espacios Compartidos.

Estos grupos combinan psicoeducación con salud mental e incluyen talleres que enriquecen cada sesión. Estas sesiones no solo proporcionan a los asistentes información práctica y estrategias para vivir bien con la EP, sino que también sirven como un foro para compartir experiencias personales y mejorar la calidad de vida de las personas que viven con la EP y sus familias.

Con la subvención comunitaria, la Dra. Moya-Galé continuará ofreciendo estos talleres, cubriendo una variedad de temas como mindfulness, movimiento y habla, y apoyo lingüístico a nivel local e internacional.

«Gracias a esta subvención comunitaria, estamos logrando el trabajo que nos apasiona y esperamos continuar por mucho tiempo. Nuestros grupos dan la bienvenida a personas hispanas/latinas que viven con la EP y sus familias y nuestro objetivo es empoderar a esta maravillosa comunidad». - Dra. Moya-Galé

Su objetivo es continuar aumentando la conciencia sobre la EP, crear recursos para los participantes basados en la experiencia de Espacios Compartidos y compartirlos con organizaciones interesadas en crear programas similares.

Conozca a Sara Correal: ampliando el acceso al ejercicio desde Austin hacia el extranjero

Un estudio de 2023 en California rural encontró peores síntomas motores y no motores en comunidades latinas. Dado que el ejercicio puede mejorar la función cognitiva y mejorar algunos síntomas de la EP, establecer una rutina de ejercicio poco después del diagnóstico es esencial. En Austin, TX, Power for Parkinson's en Español, ayuda a abordar esta brecha al proporcionar programas de ejercicio gratuitos dirigidos a los síntomas tanto presenciales como en línea.

Sara Correal, directora de Programación e Innovación en Power for Parkinson's, encontró que esta subvención comunitaria fue fundamental para ayudarla a expandir y fortalecer su programa en español.

• A nivel local, la subvención apoyó la entrega de clases presenciales que proporcionan un espacio seguro y culturalmente receptivo para el movimiento, la educación y la conexión comunitaria.
• A nivel internacional, expandieron su canal de YouTube en español, haciendo que recursos de ejercicio de alta calidad específicos para Parkinson sean accesibles para personas y familias más allá de su comunidad de Austin.

«Este financiamiento de la subvención comunitaria asegura que las clases puedan ofrecerse de manera regular, proporcionando confiabilidad y continuidad. Esta estabilidad es esencial para construir confianza y compromiso a largo plazo», dijo Sara.

Como resultado, el programa ha alcanzado a miles de personas alrededor del mundo que de otra manera no habrían tenido acceso a rutinas de ejercicio específicas para la EP en español.

Al enfocar intencionalmente los recursos en una comunidad específica y desatendida, Sara y su equipo alinearon su programación con las necesidades culturales y lingüísticas de los participantes, eliminando las barreras del idioma que a menudo limitan el acceso a la atención basada en evidencia para la EP. Este enfoque permite que el contenido esté disponible, sea accesible y relevante.

Conozca al Dr. Jose Cabassa: proporcionando programas comunitarios gratuitos de boxeo en NYC

En Nueva York, el Dr. Jose Cabassa, fundador de Moving Brains Foundation, ofrece una clase de ejercicio presencial gratuita semanal en un gimnasio de boxeo profesional para ayudar a quienes conviven con la EP a incorporar el ejercicio como parte de su plan de tratamiento.

«El financiamiento de la subvención comunitaria de la Parkinson's Foundation nos ayuda a alcanzar a la comunidad latina y proporcionar recursos en inglés y español, haciendo que la información sea más accesible. Esto es especialmente importante en estructuras familiares complejas, donde la generación mayor con la EP puede comprender mejor en español, mientras que la misma información puede ser más accesible para sus hijos en inglés», dijo el Dr. Cabassa.

El financiamiento de la subvención comunitaria permitió promover estas clases en Harlem, Washington Heights y el Bronx en NY, donde viven más de 1 millón de latinos. La subvención también fomentó colaboraciones con otros beneficiarios de subvenciones con el objetivo de mejorar las vidas de las personas en su comunidad.

«¡No espere para comenzar! ¡Hágalo! Aunque los programas de ejercicio pueden ofrecer una variedad de enfoques, el primer obstáculo para incorporar el ejercicio como tratamiento es la constancia», dijo el Dr. Cabassa, alentando a las personas a unirse a un programa local de la EP.

Cómo encontrar un programa comunitario

Gracias a la dedicación de los participantes de la subvención comunitaria, las comunidades de habla hispana con la EP en todo el país están obteniendo mejor acceso a educación, ejercicio y apoyo.

Estos cinco beneficiarios de la subvención comunitaria están derribando barreras, construyendo conexiones y empoderando a las personas y sus familias para vivir bien con el Parkinson.

Ya sea que usted conviva con la EP o esté apoyando a un ser querido, hay programas disponibles para satisfacer sus necesidades.

• Explore nuestra lista completa de beneficiarios de subvenciones comunitarias.
• Conéctese con su Parkinson's Foundation Chapter para programas locales de la EP.
• Únase a nuestras clases de bienestar mental y ejercicio PD Health @ Home y EP Salud en Casa en inglés y español.

Para obtener ayuda para encontrar un programa cerca de usted, llame a nuestra Línea de Ayuda al 1-800-473-4636, opción 3 para español. 

If you’re living with Parkinson’s disease (PD), the decisions being made every day at federal, state and local levels can directly shape your life. States can often move faster than Congress and the federal government to protect and improve the lives of people living with PD. They can experiment, share ideas and build on what neighboring states are doing.

State lawmakers are also a lot more accessible. They live in your communities. And because they represent fewer people, you're more likely to actually get a chance to sit down, share your Parkinson's story and make the case for legislation that can make a difference.

Here's how the Parkinson's Foundation is putting that to work on the state level this year to advance our policy priorities.

Helping to Prevent Parkinson's Disease by Banning Paraquat

Research has linked the widely used herbicide paraquat to an increased risk of developing Parkinson's. Paraquat has been banned in more than 70 countries, but it is still sold and used in the U.S. Even as we push for a nationwide ban, we are also pushing for state-level bans and restrictions in states that are willing to act on the evidence faster than the federal government.

At the start of 2026 state legislative sessions, the Parkinson’s Foundation was tracking bills to ban or restrict paraquat in 13 states. Vermont led the nation with passage of their legislation this year, while several other states are still considering their bills. The Foundation has testified at hearings, organized advocates to reach out to their representatives and showed up at press events.

• 

  In Pennsylvania, Parkinson’s Foundation Ambassador Leslie Zimmerman and Research Advocate Chris Kustanbauter met with state lawmakers to share their stories of living with PD and how they were likely exposed to paraquat years before their diagnoses. 

• In Minnesota, Parkinson’s Foundation Minnesota & Dakotas Chapter Board Member Lisa Erickson testified in support of the paraquat bill in the House and Senate, and spoke at a press conference alongside other advocates. 

• In New York, Foundation staff and volunteers participated in a paraquat rally on May 13. Research Advocate Mike Mooney spoke about his experience living with Parkinson's and working at a landscaping company in high school and college where he was exposed to chemicals.

Even in states where paraquat legislation has not yet passed, the Foundation made meaningful strides in educating lawmakers and the public about the links between paraquat and Parkinson's disease. That groundwork will drive continued advocacy in 2027 state legislative sessions. 

Funding Parkinson's Research at the State Level

One of the most direct ways states can make a difference is by investing in research. This year, the Parkinson's Foundation is working to secure state research funding in California, Florida, Pennsylvania and Minnesota, with Florida and Pennsylvania building on progress made last year.

In California, the Foundation is championing a bill that would authorize bonds to fund scientific research on Parkinson's disease and several other diseases. On April 13, Associate Vice President of Advocacy and State Policy Deborah Swerdlow joined around 50 Parkinson's advocates from across California, including volunteers and board members of the Parkinson's Foundation California Chapter, at the State Capitol for a Parkinson's Advocacy Day. 

Advocates met with lawmakers to push the bill forward, educate legislators on the dangers of the herbicide paraquat and discuss legislation to improve emergency preparedness and home- and community-based services. If the State Legislature passes this bill, it will appear on the November 2026 ballot for voters to approve the funding.

Improving Access to Care and Coverage

The Parkinson's Foundation is working on two fronts when it comes to care: 

1. Improving quality of life for people with Parkinson's and their care partners right now

2. Building toward a future where every person who receives a Parkinson's diagnosis can access timely, affordable, quality care

The Foundation has joined a nationwide coalition — including organizations focused on cancer, arthritis, ALS and Alzheimer's disease — to expand insurance coverage for biomarker testing at the state level. Biomarkers are biological signs that can be measured to help diagnose a disease, track how it's progressing and evaluate whether treatments are working. 

When insurance is required to cover biomarker testing, it becomes more affordable and more accessible. Thanks to this coalition's work, Mississippi and Tennessee enacted biomarker coverage in 2026 and the push continues in other states.

Looking ahead, the Parkinson's Foundation has developed a multiyear roadmap to transform PD care through policy reform and coordinated action. Parkinson's Care and Innovation: A Patient-Centered Agenda for Change outlines four priority solutions to guide policy action, as well as the federal National Parkinson's Project. It grew out of conversations with care leaders, experts, people living with Parkinson's and innovators because people with Parkinson's are at the center of everything we do. Learn more about the roadmap. 

Get Involved

What happens at the state level is connected to everything. The research funding secured this year could become a new treatment option in five years. A paraquat ban passed now could mean fewer diagnoses in your community. Insurance coverage expanded today helps a person with Parkinson's afford their care tomorrow.

Want to get involved? Visit our Advocacy Center to join our Advocacy Network and contact your representatives. You can also directly reach our policy team at Policy@Parkinson.org.

Me acuerdo que, a la edad de 10 años, miré los primeros temblores en mi mano derecha y mi marcha al caminar se sentía diferente. También quería entender qué le estaba pasando a mi cuerpo. 

Me diagnosticaron en el 2002, a la temprana edad de 25 años. Ahorita tengo 48. Así es que tengo 23 años luchando contra la Enfermedad de Parkinson (EP).

Llevo viviendo con Parkinson muchos años, pero nunca he dejado de buscar respuestas.

Desde mi diagnóstico, he querido saber más y tener más información acerca del Parkinson. Este soy yo. Encontré la Parkinson’s Foundation porque tiene mucha información y muchos recursos. Desde dar soluciones hasta tener mucha información y siempre disponible en Parkinson.org. 

Me enteré en la TV de que la Fundación estaba haciendo un estudio genético. Así encontramos PD GENEration: impulsado por la Parkinson’s Foundation en línea y me inscribí para participar. Cuando descubrí que la Fundación estaba realizando este estudio, supe que quería participar. Me sentí motivado a participar sólo porque quería aprender más acerca de mi Parkinson. Participar era una oportunidad de entender mejor mi propia historia.

Mi experiencia con PD GENEration fue muy, muy fácil. nada de problemas. Llené la información de mi nombre y formulario en línea y después, me mandaron el kit a la semana.

Después de recibir mis resultados, la sesión de consejería genética me pareció muy interesante y me dio validez. Siempre pensé que la razón de que yo tuviera la enfermedad de Parkinson era ambiental, porque mis papás fueron agricultores en los años 1970s. Siempre pensé que habíamos estado expuestos a químicos relacionados con la EP. 

Los resultados me sorprendieron. Cuando descubrí que tenía variantes genéticas de la EP, me sorprendí. Nunca imaginé que tenía el gen desde niño. 

Tener respuestas reales ha cambiado mi forma de ver la enfermedad de Parkinson. PD GENEration me abrió una puerta al conocimiento que no tuve antes.

La sorpresa fue que de los siete principales genes relacionados con la EP para los que me testaron, salí positivo en dos. Entonces, básicamente, me explicó el genetista que tengo dos genes del Parkinson y eso me dejó pensando, “¡Wow!”

Me siento bien de saber más información sobre mi Parkinson. Ahora tengo un documento válido que demuestra que yo cargo el gen del Parkinson.

Para quien viva con Parkinson, les recomiendo mucho que participen en PD GENEration. ¿Por qué no saber más acerca de uno mismo? ¿Acerca de su Parkinson? 

Creo que este estudio es especialmente valioso para la comunidad de la EP porque en nuestra comunidad hispana, la investigación del Parkinson no siempre nos alcanza ni refleja. Muy a menudo, un diagnóstico es donde termina el recorrido de la EP para muchos. Un doctor te dice que es Parkinson y ya no hacemos nada más. 

Como hispanos, necesitamos participar en estudios como este. Nuestra comunidad merece tener acceso a la información y a oportunidades como PD GENEration. participar en las investigaciones es alzar la voz de los hispanos en la investigación.

PD GENEration fue una buena experiencia para mí. Recibí buenas noticias: las respuestas a las preguntas que quería saber acerca de mi Parkinson. 

Participar en este estudio tuvo un impacto en mi familia. Tengo dos hijas y ahora estoy pensando en su futuro. Participar no fue sólo para mí; fue para mi familia. Siento que participe en las investigaciones así hoy abre las puertas a las generaciones futuras. 

La investigación es esperanza.

Lea la historia de Ian en inglés

Los testimonios proporcionados por los participantes del estudio reflejan experiencias personales y no necesariamente representan las opiniones del patrocinador del estudio. No sustituyen el consejo médico, y los resultados del estudio pueden variar según las circunstancias individuales. Consulte siempre con su proveedor de atención médica antes de tomar cualquier decisión relacionada con su salud.

Al participar en PD GENEration, los participantes pueden descubrir nuevos conocimientos acerca de su genética, entender los riesgos de su familia y ayudar a beneficiar a las futuras generaciones. Aprenda más e inscríbase hoy.

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.

“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.

• Parkinson’s Treatment

• Parkinson's Medications 101

• Join A Study