Join the Parkinson’s Foundation (in person or online) for the New York Chapter Parkinson’s Symposium. Hear about current and upcoming treatments, ongoing research, and resources available in your community to help you live your best life with Parkinson’s.
Speakers:
Matthew Moore, MFA
Parkinson’s Activist, Actor, Playwright, Keynote Speaker, Coach
Kelly Andrzejewski, DO, PhD
Department of Neurology
UBMD Neurology
Assaf Berger, MD
Department of Neurosurgery
UBMD Physician’s Group
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Join the Parkinson’s Foundation (in person or online) for the New Jersey & Pennsylvania Chapter Parkinson’s Symposium. Hear about current and upcoming treatments, ongoing research, and resources available in your community to help you live your best life with Parkinson’s.
Speakers:
Jacqueline Cristini, PA
Hackensack Meridian Health
Jill Farmer, DO, MPH, FCPP, DipABLM
BoroNeuro
Vanessa Christine Milano, MD
Hackensack Meridian Health
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
IU Health and Parkinson's Foundation Midwest Chapter, PD Symposium
10:00 am to 2:00 pm EST
Free
Guest Check-In begins at 10 a.m. and the program starts at 10:45 a.m.
The Parkinson’s Foundation, in collaboration with IU Health-A Parkinson's Foundation Center of Excellence, is hosting its annual Parkinson’s Disease Symposium. This informative event will feature discussions on key topics such as sleep, mindfulness-based stress reduction, and the impact of Parkinson’s disease on autonomic function. Attendees will also have the opportunity to explore a vendor fair, highlighting valuable local resources for individuals affected by Parkinson’s disease.
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.
Speakers from IU Health Neuroscience Center- A Parkinson's Foundation Center of Excellence:
Dr. Cynthia L. Bodkin, MD
Dr.Alex C. Barboi, MD
Eden C. Mock MSW, LCSW
Check In/Vendor Fair/Coffee-10:00-10:45 a.m.
Welcome/IU Health & Parkinson Foundation-10:45-11:00 a.m.
Parkinson’s & Sleep/Dr. Cynthia L. Bodkin, MD-11:00-11:30 a.m.
Q&A with Dr. Cynthia L. Bodkin, MD -11:30-11:45 a.m.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Join us on Saturday, March 8, 2025 for the first annual Move &Mingle Miami at the Newman Alumni Center at the University of Miami! Raise a glass to better lives together as we move & mingle to fight Parkinson’s, featuring cocktails, food, music, and a silent auction.
If you are unable to attend the event, but you would like to make a contribution, you can donate here.
If you prefer to make your gift via check or through another giving channel, such as a donor-advised fund, a check, made payable to the Parkinson's Foundation, can be mailed to: Parkinson's Foundation, Attention: Move & Mingle Miami, 5757 Waterford District Drive, Ste 310, Miami, FL 33126. Tax ID is 13-1866796.
For additional questions, please contact Karen Lopez at klopez@parkinson.org or 305-537-9930.
Podcasts
Episode 175: Reframing Your Thoughts with Mindfulness
Mindfulness is the intentional act of paying attention to one’s body, sensations, thoughts, feelings, or surroundings in the present moment, without judgment. Practicing mindfulness can give a sense of calm, help manage pain, reduce stress, and improve clarity and mental well-being. In being aware of and calmly accepting feelings, thoughts, and bodily sensations in a non-judgmental way, individuals can reshape their thoughts and expectations into something more manageable. For people with Parkinson’s disease (PD), mindfulness is particularly good for reducing anxiety and depression, as well as coping with daily stressors.
In this episode, Crista Ellis, Senior Community Program Manager with the Parkinson’s Foundation and a certified yoga and meditation educator, describes what mindfulness is, how easy it is to practice in a short amount of time, and how it can benefit people with PD. She also leads us through a brief mindfulness practice for listeners to participate in.
Released: January 28, 2025
Crista Rose Ellis is a dedicated yoga instructor, mindfulness teacher, and advocate for holistic wellness. Originally from Ohio and now based in Asheville, North Carolina, Crista holds a degree in Psychology from Miami University of Oxford, Ohio, and has completed 300 hours of yoga teacher training, specializing in Hatha, Vinyasa, Yin, and Restorative styles. She is also certified in mindful meditation and Reiki, weaving these practices into her work with individuals and communities.
Crista’s journey with yoga has been one of curiosity, self-acceptance, and surrender. Through her warm, compassionate teaching style, she creates spaces for others to connect, find balance, and navigate life’s challenges.
In her professional role, Crista has spent nearly a decade serving the Parkinson’s community through the Parkinson’s Foundation. She manages and facilitates international community education programs, empowering individuals impacted by Parkinson’s disease to explore the benefits of yoga and mindfulness. As part of her work, Crista hosts weekly "Mindfulness Monday" meditation sessions through the Foundation’s virtual PD Health @ Home initiative. Her passion is to educate, inspire, and connect communities locally and globally, empowering individuals to embrace holistic well-being.
Empowering Black and African American Communities with Parkinson’s: Education and Advocacy in Action
Black and African American people living with Parkinson’s disease (PD) often face significant health disparities, limiting access care. To bridge this gap, the Parkinson’s Foundation launched Parkinson’s Journey in Color: Advancing Research and Care in Your Community — events tailored to meet the unique needs and experiences of local Black and African American PD communities. Each event offered in-person genetic testing at no cost through the Foundation’s landmark genetics study, PD GENEration: Mapping the Future of Parkinson’s Disease.
A Collaborative Approach Rooted in Community
Part of our mission is to amplify the voices of those living with Parkinson’s. Parkinson’s Journey in Color was designed through a collaboration with Parkinson’s Foundation research advocates and staff. Research advocates are volunteers who complete Parkinson’s Foundation training to help ensure PD research is more efficient and effective.
When it came to Parkinson’s Journey in Color, research advocates helped guide every aspect of the events — from shaping topics to selecting central location. They also identified and worked with community partners to promote and participate in the events, ensuring that the program resonated with local audiences.
“Working alongside advocates who are all people in the PD community, we recognized their unparalleled understanding of their communities and cultural values, allowing us to create an inclusive and empowering event that reaches more people with Parkinson’s,” said Evelyn Stevens, Parkinson's Foundation senior director of community engagement.
The research advocates who helped shape these events were trained in collaboration with Morehouse School of Medicine in September 2023 (learn more in this article). These advocates, who are people living with Parkinson’s and care partners who identify as Black or African American, brought their experiences, insights and cultural expertise to the forefront of Parkinson’s Journey in Color events.
Tailored Programming to Address Community Needs
The Parkinson’s Foundation hosted three Parkinson’s Journey in Color events in 2024.
Atlanta, GA: Our March 9 event was held alongside Morehouse School of Medicine and Emory Brain Health Center. Fifty-five people attended, with most saying it was their first Parkinson’s Foundation event. Ten people completed PD GENEration testing at the event.
Charlotte, NC: Our September 14 event hosted 51 attendees and was held at The Park Church, a recommendation by a research advocate that allowed the Foundation to strengthen its connections with faith-based leaders and trusted sources within the Black and African American community. Attendees shared their experiences with participating in research, including PD GENEration. The event featured a “Connections to Care” table that provided resources for local neurologists and an opportunity to meet with local healthcare professionals experienced in PD.
Chicago, IL: Our November 16 event hosted 45 attendees and was held at the University of Illinois Chicago. Part of its focus was on research and care, with four PD GENEration sites in attendance that provided attendees with information and resources for care and PD GENEration testing. Participants also had the opportunity to meet with movement disorders specialists from Northwestern University, Rush University (both Parkinson’s Foundation Centers of Excellence) alongside University of Chicago and University of Illinois at Chicago.
“Each of our journeys are quite colorful. In Charlotte, one of our church leaders shared with me, ‘who knew so many African American people have a PD diagnosis?’ I shared there are more as well. That's what this advocacy is all about,” said Lisa Fletcher, a care partner and the Parkinson’s Foundation research advocate who suggested partnering with a local church.
Openly Discussing Critical Parkinson’s Topics
While each event featured a customized list of topics, all shared essential PD information including:
Parkinson’s Disease 101: A session led by a movement disorders specialist (a neurologist experienced in PD) who reflected the community’s identity, fostering relatability and trust.
The Importance of Research: A candid discussion that acknowledged the historical mistreatment of the Black and African American community in research while highlighting progress and current safeguards to rebuild trust.
Introduction to PD GENEration: Information on genetic testing and counseling opportunities to empower participants with knowledge and tools for proactive care.
Lived Experience Sharing: Stories and insights from local people living with Parkinson’s and their care partners, providing inspiration and a sense of shared understanding.
The Black Community & Parkinson’s
Black and African American people diagnosed with Parkinson’s have unique experiences and needs when it comes to living with PD. Research shows that Black people with PD are diagnosed at a later disease stage than white people.
Research also shows that Black people are less likely to be diagnosed compared to other racial and ethnic groups. This is in large part due to Black communities being historically excluded in the healthcare system and research studies. Because of this, the full impact of the disease within the community is still unknown.
The Parkinson’s Foundation works to bring awareness to these disparities and more so we can make health care more accessible across the PD community, through reaching and supporting populations of focus, including those who identify as Black and African American. Explore our resources and information that can help you find a specialist, build a care team and find local resources, like support groups and exercise classes.
“Parkinson’s Journey in Color represents more than just an education and care event— it is a testament to the power of community-driven solutions and advocacy,” said Evelyn. “Through centering the voices of Black and African American individuals living with Parkinson’s, we are fostering a more inclusive and equitable approach to care, research and support.”
Through initiatives like this and designing new ones that reach more populations of focus, the Parkinson’s Foundation aims to build stronger connections within local communities, address disparities in care and empower individuals with the knowledge and resources they need to thrive.
In-person check-in begins at 12 p.m. and the program starts at 1:00 p.m. A complimentary boxed lunch will be provided. Please call Jessica at (312) 762-5706 if you have any dietary requirements.
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. We will cover common Parkinson's disease (PD) medications, their benefits, potential side effects, and the need for adjustments over time. We will also emphasize the importance of a well-rounded care plan that includes exercise and social engagement to combat isolation. Together, these factors can greatly improve the quality of life for those living with PD.
Speakers
Danny Bega, MD, MSCI
Northwestern Medicine Parkinson's Disease & Movement Disorders Center, A Parkinson's Foundation Center of Excellence
Katie Fagan, MSW, LCSW, CDP
Northwestern Medicine Parkinson's Disease & Movement Disorders Center, A Parkinson's Foundation Center of Excellence
Adam Burns, PT, DPT, NCS
Allied Health Supervisor, Burr Ridge, Outpatient Center
Senior I Physical Therapist
APTA Board Certified Neurologic Clinical Specialist
Shirley Ryan AbilityLab
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.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
La enfermedad de Parkinson (EP) afecta a todos de manera diferente. Aunque los síntomas pueden variar, todas las personas con la EP experimentan una pérdida gradual de las células cerebrales que producen la dopamina, una sustancia química esencial para controlar el movimiento y otras funciones corporales importantes.
No se sabe muy bien por qué se produce esta pérdida de células, pero los científicos creen que es el resultado de una combinación de factores genéticos, ambientales y de estilo de vida. Comprender el papel de la genética en el Parkinson está ayudando a los investigadores a desarrollar nuevos tratamientos y a acercarse a una cura.
Datos relevantes
Los factores genéticos pueden aumentar el riesgo de desarrollar la EP.
Entre un 10% y un 15% de todas las personas con la EP tienen un vínculo genético con el Parkinson.
La participación en estudios genéticos ayuda a los científicos a saber más acerca de las causas y la progresión de la EP.
Pruebas genéticas:
Los capacitan a usted, a su equipo médico y a su familia para tomar decisiones informadas con respecto a la salud.
Pueden ayudarle a saber si es elegible para participar en estudios genéticos.
Podrían tener costos si se realizan fuera de un estudio.
Estudios genéticos:
Algunos ofrecen pruebas genéticas y asesoramiento gratuitos.
Los resultados se utilizan para avanzar en la investigación.
Pueden conducir a terapias específicas adaptadas a sus genes.
Entendiendo la genética
La genética es el estudio de cómo los rasgos, como el color de los ojos y la estatura, se transmiten de padres a hijos. Comienza con nuestro ADN, "un libro de cocina" que contiene unos 23,000 genes o "recetas" que determinan quiénes somos. Cada gen da instrucciones para fabricar proteínas, esenciales para reparar el cuerpo, reforzar el sistema inmunitario y realizar otras tareas importantes.
Los genes pueden presentar cambios llamados variantes, que heredamos de nuestros padres. La mayoría de las variantes son inofensivas, pero algunas pueden afectar las proteínas y aumentar el riesgo de problemas de salud. A fin de cuentas, nuestra salud depende de la combinación de nuestros genes, estilo de vida y entorno.
Cómo influye la genética en el Parkinson
Los cambios en ciertos genes, como LRRK2, GBA y SNCA, pueden aumentar el riesgo de desarrollar Parkinson o influir en la evolución de los síntomas en personas ya diagnosticadas.
Los investigadores están estudiando cómo varían estos cambios genéticos entre diferentes grupos para entender por qué el Parkinson es más común en algunas comunidades. Esto podría darnos pistas sobre por qué la EP varía de una persona a otra.
Pruebas genéticas
Las pruebas genéticas pueden ayudar a identificar los riesgos de desarrollar Parkinson u orientar las opciones de tratamiento.
Generalmente consisten en un análisis de muestras de sangre o saliva para detectar cambios en el ADN o las proteínas.
Algunas pueden hacerse en casa y enviarse por correo, mientras que otras requieren una visita en persona al consultorio.
Los costos y la cobertura de seguros pueden variar.
Antes de hacerse una prueba genética, hable con su médico sobre el proceso y sus posibles implicaciones. Los asesores genéticos pueden ayudarle a saber qué esperar, abordar las emociones que surjan, comprender los resultados y guiar los siguientes pasos.
Estudio genético de la Parkinson’s Foundation
PD GENEration: Trazando el futuro de la enfermedad de Parkinson (PD GENEration: Mapping the Future of Parkinson’s Disease) es un estudio global que ofrece pruebas genéticas y asesoramiento sin costo a las personas con la EP. Puede inscribirse en línea y dar una muestra de sangre utilizando un sencillo kit casero o acudir a un centro participante.
Los participantes en PD GENEration no sólo contribuyen al avance de la investigación, sino que también reciben algo a cambio: los resultados de sus pruebas. El estudio utiliza una prueba genética confiable y segura para identificar cambios en genes relacionados con la EP. También puede elegir que lo contacten si surge nueva información sobre sus resultados.
Los estudios actuales buscan tratamientos para personas con cambios o variantes específicos en genes como LRRK2, GBA o SNCA. Los investigadores creen que enfocarse en estos genes puede conducir a terapias mejores personalizadas. Conocer su genética puede ayudarle a averiguar si reúne los requisitos para estos estudios.
Consejos sobre pruebas e investigación genéticas
Comuníquese con nuestra Línea de Ayuda para preguntas sobre las pruebas genéticas y para aprender más sobre el estudio PD GENEration.
Sepa qué esperar. Para la mayoría, la prueba saldrá negativa para cambios genéticos relacionados con la EP, pero esta información es clave para avanzar en la comprensión del Parkinson.
Manténgase al día con las investigaciones genéticas. Estudios como PD GENEration ofrecen valiosos conocimientos sobre la EP.
Educational Events
Let's Talk About It
1:00 pm to 3:00 pm EST
Free
Check-in starts at 12 p.m. and the program starts at 1 p.m.
There are many non-motor challenges associated with Parkinson's disease that may not always be easy to discuss. With a focus on sleep issues and falls, this program will provide strategies for coping and talking about it with healthcare providers or loved ones. We will hear about how Parkinson's affects sleep quality and learn about the neurobiology behind fall risk.
Speakers
Mark Garwood, MD
Assistant Professor of Neurology, Michigan Medicine
Vikas Kotagal, MD, MS
Associate Professor of Neurology, Michigan Medicine
Katie Afton
Coordinator of Rock Steady Boxing at TITLE A2
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 done in partnership with Michigan Medicine and registration information will be shared with them.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Sleep disturbances are a common and often challenging symptom of Parkinson’s disease (PD). This program explores three prevalent nighttime interruptions—Restless Legs Syndrome (RLS), REM Sleep Behavior Disorder (RBD), and insomnia—that can affect individuals with PD and their care partners. This session will provide an in-depth look at the causes, symptoms, and practical management strategies for these sleep disorders.
Speaker
Roneil G. Malkani, MD
Associate Professor, Northwestern University Feinberg School of Medicine
Neurologist, Northwestern Memorial Hospital
Specializing in Sleep Medicine and Movement Disorders
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.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
