In a landmark investment to accelerate the path to a Parkinson’s disease (PD) cure, in 2019, the Parkinson’s Foundation awarded $8 million to establish four elite Parkinson’s Foundation Research Centers: Yale School of Medicine, University of Michigan, University of Florida and Columbia University. Each one received $2 million over four years.

In this series of articles, we share each center’s story — their goals, successes, surprises and the future of their PD research. In this article, we cover the research progress made at the Parkinson’s Foundation Research Center and Center of Excellence at the University of Florida.

Exploring the Overlaps Between IBD and PD

Since the first classification of Parkinson’s disease (PD) over 200 years ago, gastrointestinal distress has been routinely linked to PD. As many as 80% of people with PD experience digestive non-movement symptoms such as constipation, nausea and gastroparesis (delayed emptying of the stomach). 

More severe inflammatory bowel diseases (IBD), such as Crohn's disease and ulcerative colitis, are linked to an increased risk of developing PD. Scientists are working to solve why the diseases are linked and how improving gut health could have protective effects against PD development and progression.

Researchers at the University of Florida, along with collaborators at Emory University, investigated three distinct yet connected elements of gut health and PD:

• Malú Gámez Tansey, PhD, and Parkinson’s Foundation Scientific Advisory Board member, uncovered how genetic variants of LRRK2 that are associated with PD impact inflammation in the gut and how that affects the brain. 
• Tim Sampson, PhD, discovered how alpha-synuclein, the hallmark protein in PD, plays an important role in protecting the gut from infection. 
• Nikloaus McFarland, MD, PhD, Chris Forsmark, MD, and Michael Okun, MD, Parkinson’s Foundation National Medical Advisor, collaborated with Dr. Tansey to find common gut health “molecular signatures” between people with PD and IBD.

LRRK2 Variants Lead to Immune System Burnout in the Gut and Brain

Genetic variants in the LRRK2 gene significantly increase the risk for developing PD, particularly when combined with other risk factors. PD GENEration, the international research study that provides genetic testing and counseling at no cost for people with PD, determined that 12% of study participants had a primary PD gene variant. Of those, 17% had a PD-associated LRRK2 variant.

LRRK2 variants are also associated with increased risk of developing Crohn’s disease, a chronic inflammatory bowel disease. Dr. Tansey, who has researched PD for more than 20 years, theorized that this LRRK2 overlap between Crohn’s disease and PD highlights how gut inflammation could lead to neurodegeneration in the brain.

“Before this award, investigations into LRRK2 and alpha-synuclein and any interaction between them was mostly focused on the brain, not the gut.”

– Dr. Tansey

First, Dr. Tansey and her team induced colitis — inflammation in the large intestine — in mice and observed how it impacted their gut and brain health. They found that colitis triggered immune system responses in the gut and the brain and altered the types and amounts of protein produced in the brain during peak inflammation. These findings strengthen evidence for the gut-brain axis, showing how inflammation in the gut can affect brain health.

Dr. Tansey then investigated how a PD-associated LRRK2 variant, called R1441C, affected mice. Interestingly, young mice with a R1441C had stronger, more reactive immune systems driven by increased effectiveness of an immune cell type called macrophages. However, this exhausted their immune system in the long run, reducing their ability to fight infection and manage inflammation. The researchers confirmed that these effects were directly linked to LRRK2 activity.

These studies highlight two scientific takeaways: 

1. Inflammation in the gut triggers immune system reactions in the brain.
2. PD-related LRRK2 mutations may weaken the immune system with age, making the brain more vulnerable to infection and inflammation. 

With ongoing and future experiments, Dr. Tansey wants to connect these dots by examining how the brain reacts to chronic gut inflammation and different LRRK2 genetic variants. Such research will significantly advance our understanding of how PD and Crohn’s disease are interconnected and how effectively treating one could positively impact the other.

Alpha-Synuclein Protects the Gut from Bacterial Infection, But Too Much Could Endanger the Brain

In PD, alpha-synuclein proteins misfold and form disruptive clusters in the brain called Lewy bodies. These clumps may trigger the loss of dopamine-producing neurons. Scientists have also found misfolded alpha-synuclein in the gastrointestinal (GI) tract in people with PD. But alpha-synuclein may also play an important role in protecting the GI tract.

Dr. Sampson, an Emory University co-investigator for the PF Research Center, sought to understand alpha-synuclein’s positive role in gut health. This research could help explain how alpha-synuclein can become disrupted in ways that then contribute to PD. He and his team first wanted to determine if alpha-synuclein protects against bacterial infection in the gut. 

“Since others have observed that alpha-synuclein is important for controlling infections and that certain microbes (bacteria, viruses) can result in its upregulation, we were interested in understanding what its contribution to immunity may be.” 

- Dr. Sampson. 

They used three types of mice: one with no alpha-synuclein, another with extra alpha-synuclein, and one with a normal amount of alpha-synuclein. Dr. Sampson observed how the mice reacted to a C. rodentium infection, a bacterium that affects mice like E. coli affects humans.

The mice without alpha-synuclein had a significantly worse time dealing with the infection compared to the normal mice, while the mice with extra alpha-synuclein showed stronger immune resistance to the bacteria. 

These results support the hypothesis that alpha-synuclein has a protective immune role in the gut, and future experiments are being designed to uncover how it works. Early data suggest that alpha-synuclein might act directly on the bacterial populations in the gut, curating a gut environment that resists infection from foreign microbes.

Despite these benefits, Dr. Sampson and his team suspected that alpha-synuclein could also harm the brain and nervous system. To test this, after the mice recovered from the infection, the researchers examined neurons in the gut and brain and found a loss of dopamine neurons in both areas. The extra alpha-synuclein also appeared to form Lewy body-like clumps. 

These experiments have uncovered new information about alpha-synuclein and its importance in the gut-brain axis. Dr. Sampson’s current research is exploring how alpha-synuclein protects the gut and how future therapies could preserve these benefits while preventing its role in PD development.

PD and IBD Share Key “Molecular Signatures” In the Microbiome

With PD and IBD being closely linked, understanding their shared biology could identify new treatments that protect gut health and lower PD risk. This was the rationale behind the third research center project, led by Dr. Tansey with collaborations from Drs. McFarland, Forsmark and Okun. 

“The long-term goal of these studies was to understand the extent to which having IBD may increase the risk for PD in certain individuals, and the extent to which a therapeutic intervention that helps patients with IBD could also help patients with PD.” 

– Dr. Tansey

In this study, the research team sought to find similarities and differences between people with PD and IBD in their gut microbiomes. The microbiome is a complex ecosystem of trillions of bacteria, fungi, viruses and other microorganisms that live in a person’s digestive system. Maintaining a healthy microbiome is important for digestion, immunity and brain health — while microbiome disruption can lead to health issues.

Dr. Tansey and her colleagues recruited 54 people with PD, 24 with IBD, and 16 without either disease to provide fecal, blood and gut tissue samples that offer a snapshot of their microbiomes and immune systems. Using special microbe-measuring techniques, they created microbiome maps for each group and compared them. 

Their key finding was that people with both PD and IBD had lower levels of bacteria that produce short-chain fatty acids, which help control inflammation and protect the brain. 

While it is unclear whether these changes cause or result from PD or IBD, reduced amounts of short-chain fatty acids may be important treatment targets for both diseases. Future research will explore how these microbiome trends work and can help prevent IBD and PD. 

“Thinking Outside the Box by Looking Outside the Brain”

Charting the connections between IBD and PD along the gut-brain axis is no simple feat. Thanks to support from becoming a Parkinson’s Foundation Research Center, the University of Florida and Emory University research teams made significant scientific progress toward understanding how these diseases overlap.

These projects also fostered new academic collaborations that are accelerating PD research into the future. “Being a Research Center promoted multidisciplinary team science between Emory neuroscientists and University of Florida neuroscientists and neurologists,” said Dr. Tansey, “It helped us sharpen our focus and next steps to collaborate with gastroenterologist Rodger Liddle at Duke to receive a larger extramural grant from the ASAP Collaborative Research Network on the gut-brain circuit in Parkinson’s.”

Each project’s success has also empowered new research directions for the others; for example, the human microbiome research uncovered new biological pathways that can be further explored using mice. “Through the UF team's interrogation of human PD, we now have highly relevant pathways to test in animal models and correlate back to humans,” said Dr. Sampson. “These projects are still ongoing, and we are excited to continue our collaborations that were initiated through the Center.”

These breakthroughs have also accelerated the scientific careers of new PD researchers. Rebecca Wallings, PhD, assisted Dr. Tansey with the research into how LRRK2 variants affect the immune system. During this work, Dr. Wallings wanted to learn more about how innate immune cells were impacted, so she applied for and received a Parkinson’s Foundation Launch Award to do so. This continued support has helped Dr. Wallings get to where she is now: running her own lab focused on LRRK2 PD research. 

From uncovering the important gut immunity roles for two PD-related proteins — LRRK2 and alpha-synuclein — to identifying microbiome similarities between those with PD and IBD, these experiments led to foundational scientific breakthroughs. 

“Thanks to Parkinson’s Foundation support, we became committed to more focused investigations into the role of LRRK2-synuclein interactions in the gut-brain axis. It has also cemented our interest in continuing 'to think outside the box by looking outside the brain' for earlier manifestations of PD pathogenesis,” said Dr. Tansey. 

These research discoveries, and many more to follow, will continue to advance new treatments for PD and IBD, building on the Parkinson’s Foundation commitment to research.

Today, Dr. Tansey is the professor of neurology and the James A. Caplin, MD, Chair in Alzheimer’s Disease at the Indiana University School of Medicine. Rebecca Wallings is also at the Indiana University as an assistant professor and principal investigator of the Wallings Lab. 

Learn More

The Parkinson’s Foundation works to improve care for people with PD and advance research toward a cure. Learn more with these resources:

• Read the first two articles in this series: 
  • From Parkinson’s Foundation Research Center to Powerhouse: How Yale Became a Leader in Parkinson’s Science
  • Mapping the Brain in High Resolution: How the University of Michigan is Advancing Parkinson’s Neuroscience
• Discover how we are working to close gaps in knowledge about PD: Advancing Research.
• Learn about and enroll in PD GENEration — a global genetics study that provides genetic testing and counseling at no cost for people with Parkinson’s.
• Explore ways to get involved in the Parkinson’s Foundation — from becoming a research advocate to joining a research study.

Cómo las pruebas genéticas me dieron la confianza para seguir adelante con la estimulación cerebral profunda  

Cuando uno vive con la enfermedad de Parkinson (EP), cada decisión durante el tratamiento se siente importante: sopesa los beneficios, los riesgos y la incertidumbre de lo que el futuro pueda traer. Para mí, una de las decisiones más importantes fue si seguir adelante con la estimulación cerebral profunda (ECP o DBS, por sus siglas en inglés), dirigida específicamente al núcleo subtalámico (STN, por sus siglas en inglés).

Como muchas personas que consideran la ECP, pasé incontables horas investigando. Un tema que seguía apareciendo era la relación entre la mutación genética vinculada a la EP llamada GBA1 y el deterioro cognitivo después de la DBS. Lo que aprendí mediante las pruebas genéticas finalmente me dio más confianza para seguir adelante con la cirugía.

¿Qué es el gen GBA1?

Ciertas mutaciones del gen GBA1 son el factor de riesgo genético más común para el Parkinson. Las investigaciones han mostrado que las personas con Parkinson que portan una mutación de GBA1 pueden experimentar una progresión más rápida de los síntomas cognitivos y pueden tener un mayor riesgo de desarrollar demencia con el tiempo.

En los últimos años, los investigadores también han explorado cómo las mutaciones de GBA1 podrían influir en los resultados después de la ECP. Los estudios han encontrado que, aunque las personas con Parkinson asociado con GBA1 por lo general experimentan una excelente mejoría motora con la ECP, algunas pueden enfrentar un mayor riesgo de deterioro cognitivo y neuropsiquiátrico en comparación con las personas no portadoras.

El valor de saber más

Uno de los desafíos de vivir con el Parkinson es la incertidumbre. A menudo escuchamos estadísticas y probabilidades, pero esos números pueden sentirse muy impersonales.

La estimulación cerebral profunda es un tratamiento quirúrgico que se usa para ayudar a controlar los síntomas motores de la EP, incluidos el temblor, la rigidez, la lentitud de movimiento y las fluctuaciones de los medicamentos. Para muchas personas, la DBS puede mejorar significativamente la calidad de vida y reducir la dependencia de los medicamentos. Sin embargo, como con cualquier tratamiento, tuve que sopesar los posibles riesgos y beneficios de la ECP.

Cuando supe de la posible relación entre las mutaciones de GBA1 y los resultados cognitivos después de DBS, naturalmente me pregunté: ¿Tengo este factor de riesgo genético?

Esa pregunta me llevó a PD GENEration.

Cómo PD GENEration me ayudó

PD GENEration es un estudio de la Parkinson's Foundation que ofrece pruebas genéticas y consejería genética para las personas que viven con el Parkinson. El programa ayuda a las personas a entender si portan variantes genéticas asociadas con el Parkinson. Como participante, me sometí a pruebas genéticas y supe que no porto una mutación de GBA1.

Ese solo dato no eliminó todos los riesgos asociados con la ECP. Ningún procedimiento médico está libre de riesgos y la experiencia de cada persona con el Parkinson es única.

Sin embargo, saber que yo no era portador de GBA1 eliminó una preocupación importante que me había estado pesando. Según las investigaciones actuales, el mayor riesgo cognitivo observado en las personas portadoras de una mutación de GBA1 no era un factor en mi situación personal.

En lugar de tomar la decisión por mí, la información genética me ayudó a tomar una decisión más informada.

El conocimiento reemplaza el miedo

Uno de los aspectos más poderosos de las pruebas genéticas es que pueden reemplazar la incertidumbre con conocimiento. Antes de recibir mis resultados, me encontré preguntándome:

• ¿Tengo un mayor riesgo de deterioro cognitivo después de la ECP?
• ¿Debería reconsiderar la cirugía?
• ¿Me falta información importante que podría afectar mi futuro?

Después de recibir mis resultados de PD GENEration, tuve mayor claridad. Aunque todavía necesitaba evaluar todos los demás factores relacionados con la ECP, me sentí con más confianza al hablar sobre las opciones de tratamiento con mi neurólogo y el equipo de la ECP.

La información no garantizaba un resultado en particular. Pero sí brindó algo igual de valioso: tranquilidad.

La medicina personalizada en acción

Uno de los avances emocionantes en la atención del Parkinson es el paso hacia la medicina personalizada. En lugar de tratar a cada persona exactamente de la misma manera, los médicos pueden usar cada vez más información genética, clínica y cognitiva para ayudar a orientar las decisiones de tratamiento.

Las investigaciones sugieren que la información genética, incluido el estado de GBA1, puede ayudar a que las personas y los médicos tengan conversaciones más informadas sobre la ECP, las expectativas y la planificación a largo plazo.

Para mí, PD GENEration fue un ejemplo de la medicina personalizada en acción.

Mi consejo para otras personas que viven con el Parkinson

Si usted está considerando la ECP, aprenda todo lo posible, haga preguntas y tenga conversaciones abiertas con su equipo de atención médica.

Las pruebas genéticas pueden no ser necesarias para todas las personas y puede que no cambien cada decisión de tratamiento. Pero, para mí, entender mi perfil genético ayudó a quitar algo de incertidumbre de una decisión importante de mi vida.

Hoy, veo mis resultados de PD GENEration como uno de los factores que me ayudaron a seguir adelante con confianza. No supe que estaba "libre de riesgo". Lo que sí aprendí fue que una preocupación genética importante, la mutación de GBA1, no formaba parte de mi experiencia con el Parkinson.

A veces, el conocimiento no cambia el destino. Simplemente hace que el camino hacia adelante sea un poco más claro.

Y cuando usted enfrenta una decisión tan importante como la ECP, esa claridad puede marcar toda la diferencia.

Lea la historia de EDWIN en inglés

Cuando usted vive con la enfermedad de Parkinson (EP), las decisiones que se toman en el Capitolio y en las capitales estatales de todo el país pueden moldear directamente la vida diaria. Ya sea el financiamiento que impulsa investigaciones innovadoras, las políticas que determinan si usted puede acceder a un especialista o las protecciones ambientales que podrían prevenir la EP desde el principio, la política es personal.

La primavera pasada, esa verdad cobró vida de una manera poderosa. En marzo de 2026, más de 300 defensores de todo el país se reunieron en Washington, D.C. para el 2026 Parkinson’s Policy Forum (Foro de Políticas sobre el Parkinson de 2026), un evento que reunió a personas que viven con la EP, aliados en el cuidado, médicos, investigadores y defensores para llevar el mensaje de la comunidad de Parkinson al Congreso.

El Foro fue un recordatorio inspirador de lo que podemos lograr cuando hablamos con una sola voz. Aunque el Foro ya concluyó, el impulso que generó apenas comienza. Las prioridades en las políticas que los defensores promovieron en el Capitolio afectan a todas las personas que viven con el Parkinson; y aún así hay maneras poderosas de hacer oír su voz.

A continuación presentamos cinco áreas clave de políticas sobre el Parkinson en las que su voz puede marcar una diferencia real.

1. Implementación del National Parkinson’s Project (Proyecto Nacional sobre el Parkinson)

El National Parkinson’s Project es un hito histórico: es la primera iniciativa federal dedicada a la enfermedad de Parkinson. El Congreso aprobó una ley para crear el National Parkinson’s Project en 2024, pero eso es solo el comienzo. La implementación requiere presión y dedicación continuas para asegurar que la iniciativa avance sin demora.

La Parkinson's Foundation trabaja para proteger este proyecto histórico y generar impulso mientras el gobierno avanza para ponerlo en marcha. Eso significa colaborar con el Consejo Asesor del National Parkinson’s Project mientras lleva a cabo su labor vital para ayudar a prevenir, diagnosticar, tratar y, en última instancia, curar el Parkinson; así como hacer recomendaciones prácticas para mejorar la calidad de vida de quienes viven con la EP. Este proyecto representa una oportunidad que trascenderá generaciones, y defensores como usted ayudan a mantenerlo en el buen camino.

2. Mayor inversión para la investigación sobre la EP

Estamos más cerca que nunca de desarrollar tratamientos que podrían ralentizar o detener el Parkinson, no solo controlar sus síntomas. Pero ese progreso depende de una inversión sostenida. El apoyo federal para la investigación sobre la EP no ha seguido el ritmo del rápido crecimiento de la enfermedad, y la incertidumbre sobre el financiamiento pone en riesgo avances cruciales.

La Parkinson's Foundation promueve un aumento de las inversiones, incluidos $600 millones al año en investigaciones sobre el Parkinson financiadas por las instituciones de salud a nivel nacional, así como inversiones complementarias a nivel estatal que amplían y fortalecen lo que hace posible el financiamiento federal.

Cada dólar invertido en investigación nos acerca un paso más a una cura —y cada defensor que presenta el caso a un legislador ayuda a asegurar ese financiamiento.

3. Atención oportuna, asequible y de calidad para el Parkinson

El Parkinson es la enfermedad neurodegenerativa de más rápido crecimiento, con 90.000 nuevos diagnósticos cada año. Sin embargo, el acceso a atención de calidad está cada vez más fuera del alcance de muchas personas. La escasez de especialistas en trastornos del movimiento implica largas distancias de viaje. Las brechas de cobertura y los costos impredecibles generan estrés adicional. La calidad de la atención varía ampliamente según el lugar donde usted viva. 

La Parkinson's Foundation apoya políticas que cambian esta realidad al facilitar el diagnóstico y el tratamiento de la EP, estabilizar y ampliar la cobertura de telesalud para llegar a las personas dondequiera que estén, y garantizar programas sólidos de salud pública que apoyen tanto la atención como la investigación. La atención médica de calidad de las personas con Parkinson no debería estar determinada por su código postal.

Ya sea que se trate de ampliar el acceso a la telesalud o de fortalecer la cobertura de Medicare, estos cambios en políticas tienen un impacto directo en su capacidad de obtener la atención necesaria para vivir bien con la EP.

4. Abordar las amenazas ambientales para la salud vinculadas al Parkinson

Las causas del Parkinson son complejas, pero la investigación se ha vinculado con riesgos ambientales—incluidos ciertos químicos como el paraquat y el tricloroetileno (TCE, por sus siglas en inglés)— con un mayor riesgo de desarrollar la EP. Aunque en más de 70 países, incluido China, se ha prohibido el paraquat, este pesticida todavía se vende y se usa en los EE. UU..

La Parkinson's Foundation está presionando a la Agencia de Protección Ambiental y a los gobiernos estatales para que pongan fin al uso del paraquat en los EE. UU.. Este cambio de política podría prevenir innumerables casos futuros de la EP, particularmente en comunidades rurales donde la exposición a pesticidas es más común.

El cambio de política puede proteger a las generaciones futuras de recibir alguna vez un diagnóstico de Parkinson. Eso es algo poderoso por lo cual luchar.

5. Educación: acceso a información sobre la EP

El conocimiento es poder, especialmente cuando se trata de un diagnóstico temprano y de vivir bien con el Parkinson. Sin embargo, demasiadas personas con la EP, sus familias e incluso sus proveedores de atención médica carecen de acceso a información oportuna, de alta calidad y personalizada sobre la enfermedad.

La Parkinson's Foundation impulsa cambios en políticas que mejoran la educación sobre la EP para las personas con Parkinson, los cuidadores y los profesionales de la atención de la salud. Profesionales de la salud mejor informados significan diagnósticos más tempranos y mejor atención. Pacientes y familias mejor informados significan una toma de decisiones más segura y empoderada en cada etapa. El acceso a información sobre la EP también apoya la prevención, lo que ayuda a las comunidades a reconocer factores de riesgo y tomar medidas antes de que ocurra un diagnóstico.

Las personas con Parkinson están en el centro de todo lo que hacemos, y garantizar que tengan la información que necesitan es una de las formas más significativas en que las políticas pueden mejorar vidas ahora mismo.

Su voz puede cambiarlo todo

Existe una conexión directa entre las acciones que tomamos hoy y el futuro que queremos ver. Los fondos para investigación asegurados este año pueden convertirse en la nueva opción de tratamiento disponible en cinco años. La política de telesalud aprobada hoy significa que su vecino en un condado rural puede consultar a un especialista el próximo mes. La prohibición del paraquat que se promueve ahora podría significar un diagnóstico menos en su comunidad.

¿Está listo para marcar la diferencia? Visite nuestro Centro de Acción para unirse a nuestra Red de Defensores, comunicarse con sus representantes y actuar sobre los temas que más importan hoy a la comunidad de la EP.

La tecnología de inteligencia artificial (IA) está moldeando la forma en que se comparte y se usa la información de atención médica, incluso para las personas que viven con la enfermedad de Parkinson (EP). Descubra el valor de las herramientas de IA, cómo interactuar con ellas de manera responsable y por qué la orientación y el criterio de su equipo de atención siguen siendo esenciales para una atención de alta calidad. 

Este artículo se basa en una de las Charlas con Expertos – Expert Briefings de la Parkinson's Foundation organizada por el especialista en trastornos del movimiento e informático clínico, el Dr. Allan D. Wu, del Northwestern Medicine Parkinson's Disease and Movement Disorders Center, un Centro de Excelencia de la Parkinson's Foundation.

Hacer un uso reflexivo de la tecnología inteligente

La inteligencia artificial se ha consolidado rápidamente como una herramienta de ayuda para mejorar la experiencia humana y proporcionar a las personas acceso las 24 horas a información de atención médica. Sin embargo, las personas temen que la IA pueda debilitar las relaciones entre médicos y pacientes o que los chatbots puedan proporcionar respuestas inexactas. Una encuesta de YouGov de 2025 descubrió que más de la mitad de los estadounidenses eran cautelosos o escépticos respecto a la IA, aunque una encuesta de Gallup de 2025 descubrió que el 99 % de los adultos de los EE. UU. usaban un producto habilitado con IA semanalmente y el 57 % usaba IA generativa para fines personales.

Los expertos en atención médica también se mantienen cautelosos. Las lecciones del despliegue nacional de los registros médicos electrónicos (EHR, por sus siglas en inglés) mostraron que la nueva tecnología puede crear cargas adicionales. Muchos sistemas de EHR no funcionaban bien juntos, se enfocaban mucho en el papeleo y la facturación y aumentaban las exigencias y el agotamiento de los médicos sin mejorar la atención al paciente.

El campo de la informática clínica, que se expande rápidamente, enfatiza el uso de la IA para mejorar y apoyar —no reemplazar— la atención humana. Los médicos certificados en este campo usan su experiencia en medicina y tecnología para ayudar a mejorar los sistemas de atención médica y la atención al paciente, sirviendo como conexión entre la tecnología y la atención al paciente.

Acerca de la IA

La IA incluye sistemas basados en reglas, modelos estadísticos, aprendizaje automático y aprendizaje profundo, que se usan en la atención médica para documentación, detección de patrones y predicción.

Las herramientas de IA en la atención médica pueden documentar visitas, redactar registros para revisión del médico, identificar riesgos del paciente, apoyar la investigación o ayudar a gestionar las comunicaciones con los pacientes. Las personas tienen el derecho de preguntar adónde van sus datos de salud y cómo se manejarán, o de optar por no participar en la grabación y documentación impulsadas por IA de las visitas de atención médica.

La IA procesa y aplica la información de diferentes maneras:

• La IA ambiental, con el consentimiento del paciente, puede capturar conversaciones entre paciente y médico, liberando a los médicos para que se enfoquen en las interacciones cara a cara.
• La IA generativa puede transcribir conversaciones médicas en registros de visitas para que el médico los revise y apruebe.
• La IA predictiva comúnmente utiliza modelos de aprendizaje automático para examinar grandes volúmenes de datos con el fin de detectar patrones y predecir resultados. En la atención médica, podría utilizarse para ayudar a identificar los riesgos potenciales de salud de un paciente. En la investigación, se está utilizando para todo, desde el desarrollo de medicamentos hasta el análisis de datos genéticos.

Cómo las personas están utilizando la IA como aliada en la atención médica

Muchas personas están familiarizadas con las plataformas de chat y asistentes de IA — estos utilizan modelos de lenguaje extensos entrenados con cantidades masivas de datos escritos y hablados para simular conversaciones humanas. Se entrenan para aprender de las interacciones y ofrecer respuestas precisas y personalizadas.

Las personas pueden aprovechar las herramientas de IA para:

• Explicar los síntomas, diagnósticos o medicamentos de la EP. Por ejemplo, Ask PAM (Parkinson's Assistance Messenger) es una herramienta de chat impulsada por IA de la Parkinson's Foundation que proporciona respuestas confiables y basadas en evidencia sobre el Parkinson al alcance de su mano.
• Comprender facturas médicas o beneficios del seguro.
• Organizar los próximos pasos después de una visita de atención médica.

Si bien la IA puede ser útil, tenga precaución al utilizarla:

• Proteja su privacidad. Nunca proporcione información confidencial.
• La IA a veces puede reforzar ideas incorrectas.
• La IA no comprende la responsabilidad ni la responsabilidad moral.
• La IA puede presentar información falsa como un hecho. También puede presentar información sesgada.
• Tenga cuidado con el «contenido basura de IA» — contenido de baja calidad generado sin esfuerzo humano.

Cómo maximizar sus conversaciones con IA relacionadas con la EP

Obtenga la información más confiable al trabajar con IA:

• Indique el objetivo. «Ayúdeme a prepararme para mi cita con el médico».
• Proporcione antecedentes: «Me diagnosticaron hace 6 años. Tengo Parkinson con temblor dominante. Estoy tomando carbidopa/levodopa. Mi temblor ha empeorado con el tiempo».
• Especifique los recursos. «Consulte la guía de la Parkinson's Foundation sobre Preparación para una cita médica».
• Explique cómo desea que se entregue el mensaje: «Proporcióneme una lista breve con viñetas en lenguaje sencillo».
• Solicite perspectivas amplias. «Usted es un experto en Parkinson». O «¿Qué perspectiva y preguntas podrían tener mi neurólogo, fisioterapeuta, trabajador social, psicólogo o familiares?»
• Solicite ventajas y desventajas, alternativas y múltiples opciones.
• Guarde su trabajo. Las conversaciones con IA suelen ser temporales.

A veces, la IA hará preguntas para obtener más contexto. Esto se usa mejor cuando no está seguro de qué información necesita. «Necesito hablar con mi neurólogo sobre estimulación cerebral profunda (ECP o DBS, por sus siglas en inglés). Antes de responder, hágame las preguntas que necesite para darme orientación útil».

Otras formas de guiar el resultado son pedirle a la IA que responda a un nivel de sexto grado o que sea concisa. Pídale que revise su respuesta y dónde podría mejorarse la respuesta.

El potencial de la IA en la atención de la EP

Las personas que viven con Parkinson pueden tener dificultades para recordar con precisión cuándo ocurrieron los síntomas o cómo cambiaron con el tiempo. Las herramientas de seguimiento de síntomas y los dispositivos portátiles — incluidas aplicaciones para teléfonos inteligentes, herramientas basadas en Apple Watch y dispositivos como Personal KinetiGraph y StrivePD — están ayudando a monitorear los síntomas con el tiempo. Otras tecnologías portátiles incluyen dispositivos que monitorean la cognición, el temblor, el congelamiento de la marcha, el sueño y el habla.

La IA tiene el potencial de combinar datos de estos dispositivos con encuestas previas a la visita, escalas de calificación de la enfermedad de Parkinson y diarios de pacientes para ayudar a los equipos de atención a desarrollar planes de bienestar personalizados que se adapten a medida que los síntomas y las necesidades cambian, y para ayudar a conectar a las personas con ensayos clínicos relevantes.

Cómo la IA está impulsando conocimientos más profundos sobre la EP

Los investigadores están usando la IA para ampliar su comprensión del Parkinson:

• La bioinformática, el uso de IA para ayudar a analizar información biológica, se está aprovechando en ensayos como PD GENEration: Impulsado por la Parkinson’s Foundation, un estudio internacional que ofrece pruebas genéticas y consejería para personas que viven con Parkinson sin costo.
• La IA y el aprendizaje automático están ayudando a procesar e interpretar datos de la Parkinson's Progression Markers Initiative (PPMI), un estudio patrocinado por Michael J. Fox Foundation para identificar y medir biomarcadores de la EP —sustancias en el cuerpo que proporcionan información sobre la salud.
• La inteligencia artificial está ayudando a los investigadores a descubrir subtipos biológicos del Parkinson mediante el examen de datos de biopsias de piel, estadísticas genéticas e imágenes cerebrales.
• La alfa-sinucleína es una sustancia química cerebral que se pliega incorrectamente y se agrupa en personas con Parkinson. La IA está ayudando a los investigadores a comprender mejor el proceso y cómo está vinculado a la progresión de la enfermedad.
• La IA tiene el potencial de ayudar a acelerar el descubrimiento de nuevos medicamentos al identificar qué compuestos podrían dirigirse a la EP.

Desarrollos emergentes

En el horizonte, busque herramientas de IA que:

• Ofrezcan monitoreo pasivo continuo de patrones de síntomas de la EP como voz, marcha y escritura.
• Se comuniquen cuando un dispositivo portátil señale un cambio.
• Envíen recordatorios adaptativos de medicamentos basados en patrones de tiempos «on», cuando los medicamentos para la EP funcionan bien, y tiempos «off», cuando los síntomas regresan.
• Proporcionen clasificación de síntomas por IA, evaluando síntomas y sugiriendo los próximos pasos.
• Automaticen la creación de elementos de acción de atención médica, referencias y programación automática. 

La IA, junto con PD GENEration y otros estudios de investigación, también está sentando las bases para la medicina de precisión —el objetivo de adaptar el tratamiento para satisfacer las necesidades de todas las personas con Parkinson. También tiene el potencial de refinar aún más la planificación quirúrgica y la programación de dispositivos ECP utilizados para tratar los síntomas del Parkinson.

Obtenga más información

• Explore nuestra Guía del usuario de Ask PAM para obtener más información sobre la herramienta de chat impulsada por IA de la Parkinson's Foundation. PAM puede responder sus preguntas sobre EP en cualquier momento, en inglés o español.
• Lea Encuentra respuestas reales para conocer cómo la Parkinson's Foundation está ayudando a responder preguntas que evolucionan junto con la progresión de la enfermedad y la capacidad de cada persona para afrontarla.
• Comuníquese con la Línea de Ayuda al 1-800-473-4636, opción 3 para español, o Helpline@Parkinson.org quienes pueden responder sus preguntas sobre EP y proporcionar referencias.

Parkinson’s disease (PD) is often thought of as a condition that affects older adults — and most of the time, it does. But roughly 5% to 10% of people with Parkinson’s are diagnosed before age 50, a form of the disease known as early-onset Parkinson’s disease (EOPD).

Early-onset Parkinson’s carries a distinct set of challenges. People diagnosed in their 30s and 40s are often at the peak of their careers and raising families, and the disease can affect work, finances, relationships and mental health in ways that differ from a diagnosis later in life. Understanding how many people are affected — and how this varies across the world — is the first step toward directing research and resources to address the problem.

A new study published in npj Parkinson’s Disease set out to assess how common early-onset Parkinson’s is around the world and whether that picture has changed over time. Researchers in China analyzed three decades of data from the Global Burden of Disease Study 2021, a large international project that tracks hundreds of health conditions across 204 countries and territories. They estimated that between 1990 and 2021, the global burden of early-onset Parkinson’s more than doubled.

Study Results

Among adults ages 20 to 49, researchers investigated EOPD burden by looking at:

1. New cases each year (incidence)
2. The total number of people living with the disease (prevalence)
3. Years lived with disability, a standard measure of how much a condition affects daily life

All three roughly doubled or more over the study period. New cases rose from about 28,000 per year in 1990 to about 81,000 in 2021. The total number of people living with early-onset Parkinson’s grew from roughly 190,000 to nearly 484,000.

Some of that increase reflects population growth — there are more people in the world than there were in 1990. But the researchers also calculated age-standardized rates, which adjust for population size and age structure. Those adjusted rates rose too, meaning early-onset Parkinson’s became more common, not just more numerous.

The rising rates were not spread evenly across the age range. Even among adults under 50, risk climbed sharply with each age bracket — people in their late 40s were diagnosed at dozens of times the rate of those in their early 20s. That pattern isn’t surprising, since Parkinson’s risk increases with age. But this oldest bracket also saw the fastest growth over the study period, meaning the rise in early-onset Parkinson’s is being driven largely by people in their late 40s.

The same adjusted rates also reveal that the increase was not evenly distributed worldwide. 

• In 2021, rates were highest in Andean Latin America — Peru, Bolivia and Ecuador — followed by East Asia, particularly China. 
• Of the 204 countries and territories studied, more than 170 showed rising rates, with the steepest growth in middle-income and upper-middle-income countries. 
• Two countries with the fastest-rising rates were China and Norway. 
• While most regions showed growth in EOPD rates, three regions were exceptions: high-income parts of North America, Central Europe and Central Asia. 

One pattern researchers noticed is that countries with heavier pesticide use per acre of farmland tended to have higher rates of early-onset Parkinson’s. Both Andean Latin America and China have large agricultural sectors with widespread pesticide use. This is a correlation across countries, not proof that pesticides caused these cases, but it lines up with existing research linking pesticide exposure to Parkinson’s risk.

That same idea — chemical exposure — may help explain another pattern in the data. Men had roughly 1.5 times the rates of women, and that gap has widened over time. The researchers suggest that men’s greater occupational exposure to pesticides, industrial chemicals and heavy metals may be one possible explanation, along with the potential protective effects of estrogen in women. 

Highlights

• The global number of people diagnosed with early-onset Parkinson’s disease — between ages 20 and 49 — more than doubled between 1990 and 2021.
• New cases rose from about 28,000 per year in 1990 to about 81,000 in 2021
• People living with EOPD grew from about 190,000 to nearly 484,000.
• More than 170 of 204 countries showed rising rates. High-income North America was an exception, with rates declining slightly.
• The steepest growth in early-onset Parkinson’s occurred in middle-income countries, especially in East Asia and Andean Latin America.
• Higher national pesticide use was associated with higher rates of early-onset Parkinson’s disease.
• Men were diagnosed with early-onset Parkinson’s at about 1.5 times the rate of women.

What Does This Mean?

This study reminds us that Parkinson’s is not only a disease associated with aging; younger adults are also affected, and the number of younger adults living with it is growing worldwide. Given the earlier age of onset, those diagnosed with EOPD often experience the highest disease burden, spending many years living with PD. 

Accordingly, study authors noted that the increased burden of EOPD may reflect improvements in healthcare and better diagnosis— as health systems improve, more cases of EOPD get identified and recorded, and people live longer with the disease as treatments improve. However, the analysis also demonstrated a clear association between pesticide usage and rates of EOPD, indicating that PD remains closely linked with exposure to environmental contaminants even in younger adults.

Overall, the findings point to a need for earlier recognition of Parkinson’s in younger adults and for research and support services designed with this population in mind.

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

This study provides a global snapshot of the overall burden of early-onset Parkinson’s, not an explanation of what causes PD. However, these findings highlight that Parkinson’s can affect people at younger ages, reinforcing the importance of greater awareness of early- and young-onset PD. In addition, studies like this are needed to help influence policy decisions that ultimately improve the wellbeing of people living with PD. 

Earlier recognition of PD symptoms can help people seek care sooner, potentially leading to living better with PD in the long-term. The study also underscores the unique challenges many people with YOPD face, including managing careers, raising families and navigating financial responsibilities during some of the most active years of their lives.

Learn More

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

• Young-Onset Parkinson’s
• Early-Onset Community Network
• Golf Course Pesticides, Drinking Water & Parkinson’s Risk

Exposure to certain environmental contaminants is increasingly recognized as a risk factor for Parkinson’s disease (PD). Air quality plays a significant role in healthy living, and breathing in polluted air over time can lead to serious medical issues. Growing evidence suggests air pollution could be a risk factor in the development of Parkinson’s disease. However, air pollution comes in many forms from different sources, and it is not understood which types of air pollution are the greatest contributors to PD.

Brittany Krzyzanowski, PhD, is analyzing air quality information from across the U.S. to identify the high-risk pollutants associated with PD and where they are most concentrated. She recently completed this analysis as a recipient of the 2024 Clinical Research Training Scholarship in Parkinson’s Disease funded by the Parkinson’s Foundation and the American Brain Foundation, in collaboration with the American Academy of Neurology.

As a health geographer at the Atria Research Institute in New York City, Dr. Krzyzanowski uses her expertise in geospatial research to analyze environmental data to support prevention of future PD cases. Across the U.S., thousands of air quality monitoring stations, operated by federal, state, and local agencies, record the levels of various pollutants in the air.

“Since receiving the grant, I've been digging deeper into which specific air pollutants are most strongly linked to Parkinson's risk, and the picture is becoming clearer,” said Dr. Krzyzanowski. 

Dr. Krzyzanowski and her team used nationwide Medicare data and tested more than a dozen pollutants, including heavy metals, gases and different components of fine particulate matter (PM2.5) to see which were the strongest predictors of PD risk. 

“Two heavy metals — iron and vanadium — along with ozone showed the strongest associations, with weaker but still notable links to formaldehyde and a component of PM2.5 called sulfate. Because heavy metals and ozone are often tied to traffic and industrial emissions, these results point toward specific, modifiable sources of air pollution that public health efforts could target,” she said.

Dr. Krzyzanowski said her current research into air pollutants builds on two related studies that were recently published with the support of the Parkinson’s Foundation. 

Golf Study Findings

The first study, published in JAMA Network Open, found that older adults living within one mile of a golf course had more than double the odds of developing PD compared with people living more than six miles away, with the strongest associations in areas where drinking water came from vulnerable groundwater sources — suggesting pesticide runoff may play a role.

However, the proximity relationship persisted even after Dr. Krzyzanowski and her team accounted for groundwater vulnerability, and it was stronger in denser, urban areas, which points to airborne pesticide drift as a second, independent exposure route.

TCE Study Findings

In another study, published in Neurology, Dr. Krzyzanowski and team found that people living in areas with the highest levels of the industrial solvent trichloroethylene (TCE) had a higher risk of Parkinson's than those in the lowest-exposure areas. The highest TCE levels were concentrated in parts of the Northeast and Midwest, particularly the Rust Belt.

This information could guide future public health policies that reduce exposure to these pollutants, potentially decreasing the incidence of PD in vulnerable communities.

“Together, these studies reinforce a theme that's central to my research: Parkinson's risk isn't just about how much pollution someone is exposed to, but what kind,” said Dr. Krzyzanowski. “I think about this research as a bridge between data and action. It's not enough to say pollution is linked to Parkinson's risk.”

“Policymakers need to know which pollutants, at what levels, and where, so they can prioritize interventions that actually make a difference,” she said. “Whether that means tightening regulations on industrial solvents like TCE, rethinking pesticide use near residential areas or improving air quality monitoring in high-traffic corridors, my hope is that this work gives communities and decision-makers the specificity they need to act.”

Ready to take action? Visit our Advocacy Center to ask your representatives to support the federal ban on Paraquat, a dangerous chemical linked to PD that is still in use today. 

One herbicide that has been linked to Parkinson’s disease (PD) is paraquat, a widely used commercial herbicide in the U.S. On June 18, Representatives Anna Paulina Luna, a Republican representing Florida, and Chellie Pingree, a Democrat representing Maine, introduced the Paraquat Prevention Act.

The bill would ban paraquat across the U.S. People who live or work near where paraquat is sprayed have a higher risk of developing Parkinson’s. If passed, this bill would protect farmers, farmworkers, rural families and other communities from unnecessary exposure.

What would the Paraquat Prevention Act do?

The Paraquat Prevention Act would: 

• Require the Environmental Protection Agency to cancel the approvals that allow paraquat to be used
• Implement a zero-tolerance policy for paraquat residue on food
• Stop the sale and use of paraquat already in stock
• Prevent paraquat from being approved for future use

Together, these steps would remove paraquat from the U.S. market and protect people regardless of where they live or work.

How can banning Paraquat impact Parkinson’s prevention?

Researchers are still working to better understand what causes Parkinson's, but growing scientific evidence links exposure to paraquat to an increased risk of developing the disease.

One study found that people who sprayed paraquat were more than twice as likely to develop Parkinson's as people who applied other pesticides. Although paraquat has been banned in more than 70 countries, it remains available for agricultural use in the U.S.

Not everyone exposed to paraquat will develop Parkinson's. However, reducing exposure to preventable environmental risks is one way public policy can help create a future where fewer people develop Parkinson's.

“By banning paraquat, the Paraquat Prevention Act would protect Americans and help create a world where fewer people develop Parkinson’s disease in the first place.”

— Andi Lipstein Fristedt, Parkinson’s Foundation Chief Strategy and Policy Officer

Preventing harmful toxic exposures is a public policy priority for the Parkinson’s Foundation. 

Building on Progress in the States

States have begun taking action. In May, Vermont became the first state in the country to ban paraquat after advocacy from the Parkinson’s community and other public health groups. Thirteen other states have considered similar proposals this year, with Michigan, New Jersey and Pennsylvania still ongoing.

State action can protect individual communities and build momentum, but a federal ban would provide the same protection to people nationwide.

Support Extends Across Party Lines

Representatives Luna and Pingree come from different political parties and represent different parts of the country. Their partnership reflects the growing recognition that protecting people from harmful environmental exposures should not be a partisan issue.

Voters agree. A national survey found that 67% of registered voters supported banning or limiting paraquat after learning that research has linked it to Parkinson’s. Support increased to 81% after voters learned more about potential exposure risks.

This broad support provides a strong foundation for lawmakers from both parties to come together around the bill.

Help Build Support While Congress Is Home

Introducing a bill is just the first step. It takes public support to build momentum and move legislation forward.

While Congress is in recess this August, members of Congress will return home to meet with constituents at town halls and community events. These meetings are an opportunity to share your Parkinson's story and ask one simple question: Will you support and cosponsor the Paraquat Prevention Act to ban paraquat nationwide? 

Our Advocacy Center has everything you need to find an event, prepare your story and make your voice heard. Not able to attend an event? Join the Parkinson’s Foundation Advocacy Network to receive policy updates and future opportunities to contact Congress.

Volunteers are at the heart of the Parkinson's Foundation mission. Across the country, they raise awareness, build community, support programs, advocate for change and help connect people living with Parkinson's disease (PD) and their families to the resources they need.

Each year, the Parkinson's Foundation recognizes exceptional volunteers through our national volunteer awards. These awards celebrate key people whose service, leadership and dedication have made a lasting impact on the Parkinson's community.

We are proud to introduce our 2026 National Volunteer Award recipients. Meet John, Dale, Jordan, Jen, Rocky and Cindy below — and let their stories inspire you as they have us. 

Paul Oreffice Volunteer of the Year: John Poma 

John embodies the spirit of service. His leadership spans community, state and national levels — from chairing Moving Day Richmond and the Volunteer Leadership Summit to representing Virginia at the Parkinson’s Policy Forum. Through the People with Parkinson's Advisory Council, he has advised on PD GENEration: Powered by the Parkinson’s Foundation, reviewed community grants and encouraged young investigators at the research grantee summit, demonstrating his commitment to advancing science and care.

Beyond his formal roles, John consistently uses his voice to raise awareness of REM sleep behavior disorder and the lived experience of Parkinson's through local and national media. He partners with healthcare providers at Virginia Commonwealth University, a Parkinson’s Foundation Center of Excellence and beyond — including researchers at Mass General and Harvard — to advance the Foundation's mission. John believes in empowering others through education and has spoken at major events, including the Planning for Prevention of Parkinson's conference.

“One of the guiding principles of my longtime professional career in and around healthcare is that helping one person may not change the world, but it may change the world for that one person.”- John Poma

Read John's full story

Rising Star Award: Dale Picciano

Dale’s impact has been extraordinary in a short amount of time. His authenticity, leadership and willingness to openly share his diagnosis have helped break down barriers and create meaningful awareness around PD within the first responder and firefighter communities. By leveraging his lifelong connections, he not only raised significant funds for the Parkinson’s Foundation but also expanded our reach into a passionate and service-oriented network of supporters.

What makes Dale especially deserving of the Rising Star Volunteer Award is the way he channels his own experience into action for others. Rather than stepping back after his diagnosis, he stepped forward — becoming a fighter, advocate, fundraiser and source of inspiration. His dedication perfectly reflects the spirit of courage, community and perseverance that this award represents.

“I am honored and privileged to walk amongst many heroes that are fighters, that won't quit and are fighting back.” – Dale Picciano

Read Dale's full story

Top Fundraiser Award: Jordan Levin, Jen & Rocky Pontikes

Jen and Rocky Pontikes, along with Jordan Levin, transformed one idea into an inspiring movement that united hundreds of people during Parkinson's Awareness Month. Through the Million Meter Challenge, participants rowed, walked, biked and ran together to demonstrate the power of movement while raising critical funds to advance Parkinson's research and improve care.

What began with Jen's passion for rowing as a way to manage her Parkinson's symptoms grew into a multi-state community effort that inspired more than 300 participants to move more than 24 million meters and raise more than $185,000 for the Parkinson's Foundation. Their creativity, leadership and ability to bring people together exemplify the spirit of this award.

“The Parkinson's Foundation introduced me to an extraordinary community of people living with Parkinson's, care partners, advocates, researchers and healthcare professionals. Through those connections, I found my voice. What began as one of the most difficult moments of my life became my purpose.” - Jen Pontikes                                        

Read Jen and Rocky’s full story

“My hope is simple: to support the research and education that may one day cure or ease these brutal diseases, and to ensure that caregivers are never left without the information, resources and support they need on their own journey.”- Jordan Levin

Read Jordan's full story

The Nathan Slewett Legacy Community Service Award: Cindy Finestone

Cindy leads by example through extraordinary service to the Parkinson's community. As President of the Parkinson’s Foundation New York Chapter Board, facilitator of the Women with Parkinson's Community Network, Research Advocate and dedicated Moving Day volunteer, she consistently gives her time, leadership and compassion to support others living with Parkinson's.

When Cindy logged her volunteer hours for the year, she wasn't seeking recognition — she simply wanted to ensure the impact of her chapter was reflected. Only then did she realize she had contributed an incredible 339 volunteer hours, a testament to the countless ways she strengthens her local Parkinson's community.

“Being involved in the Parkinson’s Foundation makes me feel like I’m doing something that’s helping. Everything I do is somehow related to the Foundation. I attend a PD support group of 60 women, some of whom have become my closest friends — and I found this group through the Foundation. I call the Helpline for referrals. I go on Parkinson.org every time I feel a new symptom coming."- Cindy Finestone 

Read Cindy's full story

Congratulations to our 2026 award recipients! As we celebrate these six outstanding people, we are grateful for every volunteer who gives their time, talents and passion to help us make life better for people living with Parkinson's.

Explore the many ways you can volunteer with us today.