Check-in is at 12:30 pm and program starts at 1:00 pm.
Join us for a clear, practical conversation about brain imaging and Parkinson’s disease. This program will explain what different imaging tests can and can’t show, why your care team might order a scan, and what you can expect. We will also talk about when scans are necessary for diagnosis and treatment planning versus when they are not, address common questions about tests and results, and share emerging imaging technologies that may shape future PD management.
Speaker:
Dr. Roger Albin, University of Michigan
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends and the community.
Join us for the Living with Parkinson's Symposium 2026. Hear about current and upcoming treatments, ongoing research and the resources available in your community and beyond to help you live your best life with Parkinson's. Join us in person or online (via Zoom).
Hosted by the Parkinson's Foundation Carolinas Chapter and the Medical University of South Carolina—a Parkinson's Foundation Center of Excellence.
There is no charge to attend, but registration is required. The program is open to people with Parkinson's, their family, friends, and the community.
Veterans and Parkinson's: Breakfast and Q&A in St. Louis MO
10:00 am to 11:30 am CDT
FREE
Join us for Coffee & Conversation with a Parkinson's Expert Panel from Veterans Affairs—a free, informative, and welcoming session. This is a great opportunity to ask questions about Parkinson’s and gain valuable insights from professionals who understand the unique needs of veterans.
Learn about:
Available resources and support services
Specialized care options for veterans
Practical guidance for navigating life with Parkinson’s
Whether you are living with Parkinson’s or supporting someone who is, come enjoy coffee, connect with others, and get the answers you need in a supportive environment. We hope you can join us for this meaningful conversation!
Time: 10 am: Check-in and light breakfast
10:15 to 11:15 am: Q&A with expert panel from the VA
11:15 to 11:30 am: Movement break
Parking: Complimentary parking is available in the parking garage and outside surface lot. Convenient drop-off is available at the west entrance. For driving directions, please click here.
There is no charge to attend, but registration is required as a light breakfast is provided. This program is open to veterans with Parkinson's and their families.
After the Veterans Breakfast, please stay forthe free Parkinson’s Resource Fair and educational afternoon program, Living with Parkinson’s: Managing Changing Symptoms from 12 to 4 pm. Stop by the VA’s table in the Resource Fair to get your questions answered.
Hi, my name is Marjorie Webb. My Parkinson's story began a few months before the "COVID shut down" in 2020. Toward the end of 2019, I began having several unusual symptoms —I fell several times and just didn't quite feel like myself.
I went to my primary care doctor who immediately began testing. Some of my tests were delayed due to the challenges of trying to schedule them during a global pandemic. Even our large academic medical center was operating on reduced capacity for non-emergent conditions. Many tests later my diagnosis was neurological, but not certain what it was. My Neurologist worked diligently to try to help me with my early symptoms.
Fast forward to spring of 2024. Something crazy but very telling happened. My gait started freezing. This would happen at the top of the stairs or when I moved from room to room. I was then sent to a Movement Disorders Specialist at The University of Alabama at Birmingham and received a diagnosis of Parkinson's disease (PD) in the summer of 2024.
I began Sinemet and Entacapone was added later. These medications helped immensely however, I still had a great deal of "off time" — which is when the effects of Parkinson’s medication dosages may not last as long, leading to "off" periods, when symptoms return between doses. During the summer of 2025 I was approved to receive the Vyalev pump from Abbvie. It has been a game changer.
Additionally, I was very motivated to participate in the PD GENEration genetics study. I wanted to know more about my Parkinson's and perhaps be able to inform my children of any known genetic ties to PD. It was very informative and continues to be.
After receiving my PD GENEration information, I actively look for research studies. I think that participation in research is essential.
I am back to my old self most days. I now have less "off time" and sleep so much better. I currently participate in any Parkinson's research I am eligible for. I believe that research is what leads to better treatment like the Vyalev, and eventually a cure.
The only way we will find a cure for Parkinson’s is through research. Explore the different opportunities to get involved with Parkinson’s research today.
In 2025, I was diagnosed with Parkinson’s disease (PD).
Like many people, I did not arrive at that diagnosis in one clean, dramatic moment. Looking back, I can see signs that were probably there earlier — changes I explained away as age, stress, old injuries or just the normal wear and tear of life.
I spent 24 years in the United States Air Force, retiring as a Senior Master Sergeant, and then continued serving in federal government and consulting roles. I was used to solving problems, pushing through challenges and figuring things out. Parkinson’s, however, was not something I could simply outwork.
At first, I had more questions than answers. What did this mean? How fast would it progress? What should I be doing now? How would this affect my family, my future and the way I saw myself?
One of the first challenges was accepting that Parkinson’s is not just a diagnosis you receive and file away. It becomes part of daily life — medication schedules, exercise, therapy appointments, changing symptoms, fatigue and the uncertainty of what comes next. Some days the challenge is physical. Other days, it is mental: learning not to measure today’s life only against what I used to be able to do.
There was also a more personal reason I wanted to understand Parkinson’s better. My dad had Parkinson’s, too. He was diagnosed later in life, in his 70s, around 2005. At the time, I did not have the resources or understanding I have now. His primary doctor largely explained it away as an old man’s disease that made old men shake, and Dad rarely saw a neurologist.
Looking back, I wish I had known then what I know now. Parkinson’s is a complex neurological disease — not just a tremor, not just something that happens to older people, and not something families should have to figure out on their own.
That is one reason the Parkinson’s Foundation matters to me.
After my diagnosis, I began looking for reliable information. The internet is full of opinions, personal stories, miracle claims and self-proclaimed experts. Some lived experience is valuable — I share my own story, too — but I wanted information grounded in science, education and real expertise.
The Parkinson’s Foundation became one of the places I turned to for trusted resources. Its website, Parkinson.org, has helped me better understand symptoms, treatment options, exercise, care partner issues and the importance of building a knowledgeable care team.
I also receive care through the Norman Fixel Institute for Neurological Diseases at the University of Florida, a Parkinson’s Foundation Center of Excellence. Thankfully, because of advances in care and organizations like the Parkinson’s Foundation, I am in a much different place than my dad was when he was diagnosed.
My involvement with the Parkinson’s Foundation Community Network has also given me a way to turn my diagnosis into something useful. As a Parkinson’s Foundation Ambassador, I have had opportunities to help raise awareness, share resources, attend community events and connect with people living with Parkinson’s and those who care about them.
That work matters to me because people with Parkinson’s and their families already know this disease is real. The larger challenge is helping the broader public understand why Parkinson’s deserves more attention, more research, more support and more voices speaking up.
What keeps me happy, healthy and hopeful is a mix of things: my family, exercise, faith, humor, good medical care and the chance to keep serving in a different way. Through the Parkinson’s Foundation, I also learned about Rock Steady Boxing, an exercise program designed for people with Parkinson’s. Participating in Rock Steady Boxing has helped me stay active, challenged and connected to others who understand the importance of movement.
Parkinson’s has changed my life, but it has also given me a clearer sense of purpose. I cannot control everything about this disease, but I can control how I respond to it. I can keep learning. I can keep moving. I can keep showing up.
I have also started sharing my Parkinson’s journey through writing and advocacy. My platform is called From Where I Sit, because I believe perspective is shaped by where we are now and where we have been. From where I sit, Parkinson’s is not just a diagnosis. It is a daily lesson in adaptation, humility, purpose and continuing to move forward.
What advice would I give someone newly diagnosed?
Do not go through this alone. Find credible information. Build a care team you trust. Connect with others who understand the road you are on.
Exercise. Not someday. Now. Movement is one of the most important things we can do for ourselves.
Give yourself some grace. Parkinson’s changes things, but it does not erase who you are.
Parkinson’s may have changed where I sit, but it has not changed the fact that I am still here — still learning, still serving, still speaking up and still trying to make the road a little easier for the next person who hears the words, “You have Parkinson’s disease.”
This guide focuses on everyday activities such as dressing, bathing, eating and sleeping. It offers practical ideas for adapting daily routines as Parkinson’s symptoms change.
This guide can help you:
Find new ways to approach everyday activities
Learn about tools and aids that may help with daily tasks
Make your home safer and more comfortable
Explore support from professionals, family and community
Learn practical ways to support daily routines if you are a care partner
Explore topics by chapter
Choose a topic below to find practical tips, helpful strategies and everyday support for living with Parkinson’s.
Parkinson’s Foundation Shares 14 Scientific Posters at Seventh World Parkinson Congress
🧠 What will you learn in this article?
This article highlights the 14 scientific posters the Parkinson’s Foundation is presenting at the World Parkinson Congress, highlighting our work across research, care and education to improve life for people with Parkinson’s disease (PD). It discusses how we are:
Expanding access and inclusion in Parkinson’s research through initiatives like PD GENEration, helping people navigate clinical trials and genetic counseling training.
Reaching the Hispanic/Latino PD communities.
Working to improve real-world support and healthcare systems through partnerships, national policy and care innovation efforts.
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.
1. PD GENEration Sub-Studies: The Next Step to Engaging People with Parkinson’s in Research
PD GENEration: Powered by the Parkinson’s Foundationis 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:
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.
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.
PD GENEration Insights: collects expanded clinical data for eligible PD GENEration participants through self-report questionnaires and virtual clinician visits.
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.
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.
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.
Advocate for your best care with the Hospital Safety Guide.
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.
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.
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.
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.
Learn more about PD GENEration. Learn more and enroll in:
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
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.
View All 2026 Posters
Discover the scientific posters the Parkinson’s Foundation presented at the seventh World Parkinson Congress.
Descubra cómo 5 líderes comunitarios están conectando con las comunidades hispanas y latinas
🧠 ¿Qué aprenderá en este artículo?
Este artículo destaca los esfuerzos de la Parkinson's Foundation para apoyar a las comunidades hispanas y latinas que conviven con la enfermedad de Parkinson a través de subvenciones comunitarias. Se analiza lo siguiente:
Las subvenciones comunitarias de la Parkinson's Foundation tienen como objetivo cerrar las brechas en la atención de Parkinson y los recursos a nivel local en todo Estados Unidos.
Cinco programas locales que abordan las barreras en la educación y el apoyo para las personas de habla hispana que conviven con la EP.
Programas que van desde talleres educativos y grupos de apoyo hasta clases de ejercicio adaptadas a la EP y recursos para cuidadores, ofrecidos en persona y en línea.
Cómo encontrar programas locales.
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.
Navigating Parkinson's disease (PD) requires an active and informed approach to healthcare. This program will encourage individuals living with PD to take charge of their care by providing strategies for effective communication and self-advocacy before, during and after healthcare visits.
Participants will learn how to make the most of each appointment by prioritizing their needs and preparing questions and concerns in advance. Additionally, attendees will gain access to valuable tools and resources from the Parkinson's Foundation to support their journey.
Presentations for this program were recorded in advance and will be followed by a live Q&A session.
Speakers
Taylor Rush, PhD
Health Psychologist, Director of Behavioral Services and Interdisciplinary Programs, Center for Neurological Restoration, Cleveland Clinic
Kathleen Blake, MD, MPH
Vice Chair, People with Parkinson's Advisory Council
Muhammad Mahdi Nashatizadeh, MD
Director, Inpatient Movement Disorders
Associate Director, Movement Disorders Fellowship
Clinical Associate Professor, Department of Neurology
University of Kansas School of Medicine
Live Q&A
Taylor Rush, PhD
Health Psychologist, Director of Behavioral Services and Interdisciplinary Programs, Center for Neurological Restoration, Cleveland Clinic
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
Explore mindfulness techniques to promote relaxation and rest. Learn practical strategies for creating a calming evening routine to support better sleep.
Whether this is your first mindfulness Monday, or you are a returning participant, these sessions are created with the intention of including everyone.
Mindfulness practice for this program was recorded in advance.
Speaker
Crista Ellis, E-RYT, B.Sc
Yoga & Meditation Teacher, Life Coach, Founder of Rising Rose Yoga
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
