En este webinar, exploraremos los cambios en el estado de ánimo y el pensamiento asociados con la enfermedad de Parkinson. Analizaremos cómo éstos afectan la vida diaria, las interacciones sociales y el bienestar emocional, tanto de las personas con Parkinson como de sus aliados en el cuidado. Además, discutiremos estrategias para afrontar estos cambios y aumentar la motivación.
Presentadora
Ileana Pacheco- Colón, PhD
Neuropsicóloga clínica
Licenciada en psicología
Neuropsychology Associates of Miami
Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice.
In this Wellness Wednesday session, we’ll explore the science behind exercise as medicine and how it can do more than manage symptoms—it can help shape the course of the disease.
En este webinar, exploraremos el impacto de la enfermedad de Parkinson (EP) en el habla y la deglución, analizando qué sucede en la garganta que dificulta estas funciones. Además, presentaremos estrategias y ejercicios prácticos para mejorar la comunicación y la seguridad al tragar, promoviendo una mejor calidad de vida.
Presentadora
Ana Molano MS, CCC-SLP
Especialista clínica en voz y deglución
Voice Rehab
Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice.
In this Wellness Wednesday session, we’ll explore the science behind exercise as medicine and how it can do more than manage symptoms—it can help shape the course of the disease.
Este webinar ofrecerá una visión general sobre los diferentes tipos de investigación clínica, incluyendo la observacional y la intervencional. Exploraremos investigaciones psicosociales enfocadas en mejorar la comunicación en personas con la enfermedad de Parkinson y cómo las opiniones de los participantes son esenciales para la creación de grupos de apoyo culturalmente inclusivos. Se destacarán las perspectivas de los participantes y se discutirán formas de involucrarse en estudios de investigación para contribuir al avance del cuidado de Parkinson.
Presentadora
Gemma Moya-Galé, PhD, CCC-SLP
Profesora adjunta, Programa en Ciencias y Trastornos de la Comunicación
Directora del Laboratorio Comunicación, Tecnología y Diversidad Lingüística
Directora, Speech for PD
Teachers College, Columbia University (un Centro de Excelencia de la Parkinson's Foundation)
Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice.
In this Wellness Wednesday session, we’ll explore the science behind exercise as medicine and how it can do more than manage symptoms—it can help shape the course of the disease.
Living with Parkinson’s can be challenging, but there are many things you can do to maintain and improve your quality of life. This program will provide you with information to help you find the balance between a proactive approach and wondering what lies ahead.
Expert Speakers
Henry P. Moore, MD
Director of Movement Disorders at Palm Beach County
University of Miami-Miller School of Medicine
A Parkinson’s Foundation Center of Excellence
Daniel Kantor, MD, FAAN
Vice President, Clinical Research & Development | Gateway Institute for Brain Research
Tarannum Khan, M.D., CPE, FAAN, FANA
Ambulatory Director (Weston Neurology)
Staff Neurologist, Movement Disorders
Pauline Braathen Neuroscience Institute
Learn more about the expert speakers and panelists by clicking here.
Fitness Demonstration: Allie and Mark Barker, RAW Kickboxing and Fitness
Event Volunteers Needed! Service hours and lunch are provided. To sign up and learn more, visit: Volunteer sign-up here
For in-person attendees: Check-in and Resource Fair start at 9 a.m. Lunch will be served.
Unloading/Room Location: The program is located at the Main Entrance, Building B. Parking and drop-off is in front of the building. For the entrance to our parking lot, use this address: 500 NE 2nd St., Fort Lauderdale, FL 33301
There is no charge to attend, but registration is required since lunch will be served. This program is open to people with Parkinson's, their family, friends and the community.
Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice.
In this Wellness Wednesday session, we’ll explore the science behind exercise as medicine and how it can do more than manage symptoms—it can help shape the course of the disease.
Get out and move with your community! Every dollar raised supports the Parkinson’s Foundation mission to make life better for people affected by Parkinson’s disease (PD). At Moving Day Community Walks across the country, we’re fighting Parkinson’s and celebrating movement — proven to help manage Parkinson’s symptoms — and we’re doing it together. The Moving Day Community Walk Program is a complement to the Parkinson’s Foundation Moving Day, A Walk for Parkinson’s. These walks are family-friendly and help the Foundation make life better for people with PD.
The Community Walk program offers volunteers an opportunity to organize a walk in their own community that does not have a Moving Day event. The program leverages the personal experiences and community leadership of passionate volunteers to promote Parkinson’s awareness and raise funds for the Parkinson’s Foundation.”
Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice.
In this Wellness Wednesday session, we’ll explore the science behind exercise as medicine and how it can do more than manage symptoms—it can help shape the course of the disease.
Episodio 33: Consejos prácticos y recursos para vivir bien con Parkinson
La línea de ayuda de la Parkinson’s Foundation cuenta con personal de enfermería, trabajadores sociales y educadores de la salud. Están disponibles por teléfono y correo electrónico para responder a sus preguntas e inquietudes acerca de la enfermedad de Parkinson, tanto en inglés como en español.
Nuestros especialistas de la Línea de Ayuda responden llamadas de personas de toda la comunidad de Parkinson, incluyendo a quienes viven con la enfermedad, sus seres queridos, proveedores de atención médica y más. Ofrecen apoyo y recomiendan los recursos que más le interesan, sin importar dónde se encuentre en su recorrido por el Parkinson.
En este episodio, hablamos con Adolfo Diaz y Elena Godfrey, miembros de nuestro equipo de la Línea de Ayuda. Hablan acerca de preguntas frecuentes de quienes llaman, recursos acerca del Parkinson ofrecidos en español y consejos prácticos para manejar los síntomas y abogar por sí mismo ante su proveedor de atención médica.
Publicado: 8 de abril de 2025
Speakers
Adolfo supervisa la Línea de Ayuda de la Parkinson’s Foundation, un centro de contacto virtual que proporciona a las personas que viven con la enfermedad de Parkinson información, recursos y referencias de servicios de atención y apoyo en su comunidad. La Línea de Ayuda tiene una plantilla de 12 especialistas en información que atienden aproximadamente 1,900 llamadas al mes.
Además, es responsable del desarrollo continuo de la base de datos de la Línea de Ayuda, un activo clave para la Fundación para medir el impacto y el seguimiento en tiempo real de las tendencias que afectan a las personas que viven con Parkinson. Los informes y la información recopilada influyen en las iniciativas estratégicas y la programación de toda la organización.
Adolfo ha desempeñado diversos cargos desde que se unió a la Parkinson’s Foundation en 2003, incluyendo los aspectos programáticos y operativos de las iniciativas de la Fundación. Tiene una licenciatura en Administración de Empresas y como asistente de fisioterapeuta y ha tratado a niños, adultos jóvenes y personas mayores tanto en el hospital como a domicilio.
Elena es trabajadora social médica y especialista en información acerca de la enfermedad de Parkinson en la Línea de Ayuda de la Parkinson’s Foundation. Como miembro del equipo de la Línea de Ayuda, Elena ofrece a las personas con la enfermedad de Parkinson y a sus aliados en el cuidado ayuda para navegar por la variedad de preguntas, síntomas y desafíos que surgen, proporcionando educación acerca de la enfermedad, orientación acerca de las opciones de atención y apoyo y referencias de recursos específicos para el Parkinson.
Elena trabaja para la Parkinson’s Foundation desde 2021 y ha pasado la mayor parte de su carrera trabajando con personas mayores y cuidadores familiares.
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Engaging the Parkinson’s Community in Research: The Path to Better Treatments
PD community involvement in trial design outshines recent clinical trial outcomes
The role of people with Parkinson’s disease (PD) in shaping research has never been more critical than today. “People living with Parkinson’s are experts, they have the lived experience and should be engaged as equal partners in the drug development process,” said Evelyn Stevens, Parkinson’s Foundation Senior Director of Community Engagement.
One avenue of engagement is the Patient Engagement Council for Parkinson’s Research (PECPR). Established in 2021, the PECPR has worked to ensure that the Parkinson’s community has a seat at the table in drug development. A collaboration between UCB, the Parkinson’s Foundation, Parkinson’s UK, and five people living with Parkinson’s, the council believes patient insights should guide research priorities.
The goal of the PECPR was to engage those with PD in research and trial design, guiding development toward results that will most impact and benefit their lives. The council:
Developed a “playbook” for including people with Parkinson’s feedback, ensuring that medicines are designed to address what matters most to the PD community.
Prioritized accessibility and inclusivity in all stages of treatment research, so that treatments are developed with the wide diversity of the PD community in mind.
Advanced the field of disease-modifying therapies for PD, which seek to slow, stop, or even reverse the disease progression rather than simply treat its symptoms.
The council’s efforts were recognized when it won a 2024 Made with Patients award from the Patient Focused Medicines Development, underscoring the impact of patient-driven collaboration.
PECPR played a key role in shaping a recent clinical study called ORCHESTRA, testing the efficacy of the pharmaceutical company UCB’s drug, minzasolmin. Unfortunately, in December 2024, UCB announced the study did not meet its efficacy goals. Days later, another pharmaceutical company, Roche, announced similar results — their intravenous PD drug called prasinezumab also missed the primary endpoint, but suggests possible benefit in early-stage PD.
Both drugs were designed to slow the progression of PD by targeting a protein called alpha-synuclein normally found in the brain. When this protein is mishappen and builds up in the brain it disrupts brain function and leads to PD symptoms. Neither drug significantly slowed disease progression in trial participants when compared to the participant group that received a placebo.
“Developing effective disease-modifying PD treatments comes with numerous challenges,” said Maggie Caulfield, PhD, Director of Research at the Parkinson’s Foundation. “One concern is that a therapy needs to reach the right area in the brain, get into the right cells, and interact with a particular molecule — all in a system where cells in the brain are already unhealthy.”
While the minzasolmin trial did not yield the hoped-for results, PECPR’s mission remains unchanged: to push for research that directly addresses the real needs of people with Parkinson’s.
Looking ahead, PECPR is focused on expanding patient engagement strategies, refining accessibility in research, and continuing to advocate for treatments that go beyond symptom management to fundamentally change the course of Parkinson’s.
Strengthening the Odds of Finding New Disease Modifying Therapies
While trial failures for disease modifying therapies for PD are disappointing, they ultimately provide researchers with new, valuable data that will guide the next round of treatments. Researchers can utilize data (positive and negative results) to help overcome previous biological hurdles.
“Parkinson’s researchers will keep trying and tweaking until we have the next breakthrough,” said Dr. Caulfield, “There are all kinds of different ways that researchers and clinicians are trying to reach disease related targets, we just have to keep pushing and eventually something will work.”
One area where patient engagement is vital is in genetics research. Understanding the genetic factors behind PD can help researchers develop more targeted, effective treatments. Pharmaceutical companies are already partnering with people with PD to improve their clinical trials that are based on genetic ties to PD.
Studies like the Parkinson’s Foundation PD GENEration: Mapping the Future of Parkinson’s Disease are advancing this effort by offering free genetic testing and counseling to people with PD. By identifying genetic variants linked to PD, researchers can uncover new pathways for treatment — bringing the field closer to personalized medicine, where therapies can be tailored to a person’s genetic profile.
“There is a lot of hope in understanding Parkinson’s through genetics and leveraging study data to find the next disease modifying treatment,” said Evelyn.
Patience, Perseverance and Continued Progress
Every person with PD experiences unique symptoms and disease progression. These differences can be related to genetics, environment, age or other factors, all of which make finding new, effective disease-modifying therapies for PD a daunting task.
As PD research moves forward, the involvement of the PD community is invaluable and critical. Groups like PECPR and Parkinson’s Foundation research advocates ensure that the experiences of those with PD guide treatment development in ways most beneficial to the PD community.
“It’s an exciting time to see so many researchers and industry partners wanting to listen and learn from those living with Parkinson’s,” said Evelyn. “That’s what community engagement is all about — it’s a collaborative process where we combine our experience and expertise to improve the health of those living with Parkinson’s. That’s what will lead us to a cure for PD”
Learn More
The Parkinson’s Foundation works to improve care for people with PD and advance research toward a cure.
Discover how we are working to close gaps in knowledge about PD: Advancing Research
Learn about PD GENEration: our global genetics study that provides genetic testing and counseling at no cost for people with Parkinson’s.
After many years of good symptom management, Parkinson’s disease may become more challenging. Learn how Parkinson’s symptoms may change over time and new strategies available for managing them.
Expert Speaker:
Enrique Urrea-Mendoza, MD Neurologist | Movement Disorders Specialist
Assistant Professor
Department of Clinical Sciences
FSU Health | FSU College of Medicine
Lunch will be served.
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their families, friends, and the community.
This program is hosted by the Parkinson’s Foundation Gulf Coast Chapter, in collaboration with Southeast Health.
Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice.
In this Wellness Wednesday session, we’ll explore the science behind exercise as medicine and how it can do more than manage symptoms—it can help shape the course of the disease.
Join us for a webinar this month to Celebrate Movement in the PNW, with our guests Dirty Freehub! They will be sharing information about their All Access program, an amazing resource for those with PD looking to get out and ride their bike in Oregon this summer. We'll also share upcoming events in region and ways to create your own movement-based event. See you on April 23!
Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice.
In this Wellness Wednesday session, we’ll explore the science behind exercise as medicine and how it can do more than manage symptoms—it can help shape the course of the disease.
Get out and move with your community! Every dollar raised supports the Parkinson’s Foundation mission to make life better for people affected by Parkinson’s disease (PD). At Moving Day Community Walks across the country, we’re fighting Parkinson’s and celebrating movement — proven to help manage Parkinson’s symptoms — and we’re doing it together. The Moving Day Community Walk Program is a complement to the Parkinson’s Foundation Moving Day, A Walk for Parkinson’s. These walks are family-friendly and help the Foundation make life better for people with PD.
The Community Walk program offers volunteers an opportunity to organize a walk in their own community that does not have a Moving Day event. The program leverages the personal experiences and community leadership of passionate volunteers to promote Parkinson’s awareness and raise funds for the Parkinson’s Foundation.
Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice.
In this Wellness Wednesday session, we’ll explore the science behind exercise as medicine and how it can do more than manage symptoms—it can help shape the course of the disease.
