More than 110,000 U.S. veterans living with Parkinson’s disease (PD) receive care through the Department of Veterans Affairs (VA), which offers access to specialized treatment, financial benefits, and dedicated support services. In this webinar, we’ll explore the wide range of resources available to veterans with PD through the VA system, including Parkinson’s Disease Research, Education and Clinical Centers (PADRECCs), affiliated sites, and Veteran Service Organizations (VSOs). Participants will also learn how the Parkinson’s Foundation partners with the VA to provide additional education, tools, and support for veterans and their families.
Speakers
Gretchen Glenn, LCSW
Associate Director of Education
Corporal Michael J. Crescenz VA Medical Center
Philadelphia Parkinson's Disease Research, Education, and Clinical Center
Chair of the National VA Parkinson’s Disease Consortium Education Subcommittee
Helen R. Komninos (McHugh)
NSO Assistant Supervisor
DAV National Service Officer
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.
The Parkinson's Foundation is proud to partner with U.S. Department of Veterans Affairs to improve the health, well-being and quality of life for veterans with PD.
Understanding the role of genetics in Parkinson’s is helping researchers develop new treatments and move closer to a cure. This webinar will review the basics of genetics and Parkinson’s disease (PD) and explore how genetic changes may influence PD risk and how symptoms progress. Learn more about the Parkinson’s Foundation initiative, PD GENEration: Mapping the Future of Parkinson’s Disease, and why participation is helping to improve our understanding of PD and contribute to better care for individuals.
Speakers
Maggie Caulfield, PhD
Director of Research Programs, Parkinson’s Foundation
Allison Dilliott, PhD
Genomics Lead, Clinical Research, Parkinson's Foundation
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.
Exercise and staying active are essential not only for physical health but also for mental and emotional well-being, especially as a veteran living with Parkinson’s disease. This program will address how staying active can positively impact physical symptoms, mood, and overall health. Participants will learn about the benefits of exercise, discover strategies to stay active beyond traditional workouts, and explore meaningful activities that bring joy and purpose.
Hillari Olson, DPT, RYT 200
LSVT BIG®, PWR! Moves® Certified Clinician
Program Coordinator / Physical Therapist
Parkinson's Disease and Movement Disorders Program
Minneapolis VA Health Care System
Emily Hall, LCSW
Southeast PADRECC Senior Social Worker
Central Virginia VA Healthcare System
Konner Kielman, OTD, OTR/L
LSVT BIG® Certified Clinician
Occupational Therapist
Parkinson's Disease and Movement Disorders Program
Minneapolis VA Health Care System
Videos & Webinars
Taking Charge: Strategies for Meaningful Healthcare Visits
May 21, 2025
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.
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
Advancing Research
Meet a Researcher Aiming to Treat Levodopa-induced Dyskinesia
Many people with Parkinson’s disease (PD) use Levodopa, a dopamine-replacement medication, that helps improve quality of life. However, continuous use of levodopa often leads to new movement symptoms called levodopa-induced dyskinesia (LID).
Dyskinesias in Parkinson’s disease are involuntary, erratic movements that can affect different parts of the body. It is estimated that more than 50% of people who take levodopa for PD symptoms develop LID, but the neurological reasons behind this phenomenon are still not well understood.
Jeroen Habets, MD, PhD, a recipient of a Parkinson’s Foundation Postdoctoral Fellowship, seeks to identify brain wave “biomarkers” of LID, highlighting regions of the brain that go awry during LID. Then, his study will use magnetic stimulation therapy to reduce or eliminate LID completely.
“We are using a noninvasive recording technique to try and understand what happens at the surface of the brain during these periods where patients have dyskinesia,” said Dr. Habets. “We want to better understand what happens when they move involuntarily. We hope to understand better how the whole movement network functions in Parkinson’s disease and specifically this symptom.”
The patterns of neuron activation in the brain used to achieve tasks like movement, memory recall and much more can be observed and measured as brain waves. Different frequencies — the speed and intensity of the patterns — of brain waves are associated with different mental states and activities, such as the slow, calm delta waves of deep sleep or rapid, intense gamma waves of alertness and agitation.
From the lab of Andrea Kühn, MD, at the Charité University Hospital in Berlin, Germany, Dr. Habets uses a machine called a magneto-encephalograph to study participants with PD and visualize the brain wave activity that occurs during bouts of LID.
By measuring each participant’s brain waves patterns and how they change during LID, Dr. Habets hopes to find regions in the brain that could be a target for treatment. His study will use non-invasive transcranial magnetic stimulation (TMS), which involves using guided magnetic waves to affect brain wave activity.
Knowing what regions of the brain and which frequencies of brain waves are involved with LID could lead to personalized TMS treatments that alleviate debilitating levodopa side effects.
“During dyskinesia, some processes at the surface of the brain are more active than they should be or than they normally are,” said Dr. Habets. “Previous research showed that if you use magnetic stimulation, which is noninvasive and transmitted through a coil held over the head, you can give magnetic pulses to decrease activity at the surface of the brain and that patients over the hours afterwards developed less dyskinesia.”
Dr. Habets said finding a way to implement this treatment into patients’ daily lives is still a challenge, but researchers need to better understand dyskinesia to solve that problem.
He is hopeful about the potential of this research and grateful for the donors who make research grants like the one he received from the Parkinson’s Foundation possible.
“These donors are giving us time, giving us the opportunity to learn and to develop ourselves,” said Dr. Habets. “I think it has two big effects. There is a direct effect in the science that we do, but it is also growing careers. These funds, especially for young researchers, are very motivating grants to get and inspire us to move forward in our careers.”
Take Charge: Self-Advocacy Strategies to Make the Most of Healthcare Visits
For many people with Parkinson’s disease (PD) healthcare appointments with a specialist are often far apart, short on time and packed with information. Learning to be an active member of your care team — prioritizing your concerns, questions and needs before and during every healthcare appointment — can help you optimize the value of each visit.
Because no two people experience Parkinson’s the same way, diagnosis and treatment can be complex.Further, accessing expert Parkinson’s care can be difficult. While more than one million people in the U.S. live with PD, research shows that there are less than 700 neurologists trained in movement disorders nationwide. Most of these specialists are concentrated in urban areas, and it can take several months to get an appointment.
Parkinson’s visits can be fast-paced, heavy on information and the gap between appointments can be significant. The priorities you want to cover might be different than those your doctor plans to discuss. It can be frustrating to leave an appointment without talking through your top concerns or fully understanding your doctor’s recommendations. Taking an active approach to your healthcare can address this frustration and help you get more out of each appointment.
Parkinson’s care is a partnership. Your healthcare team brings medical expertise to the relationship while you bring your own expertise — your unique experience living with Parkinson’s and the knowledge of what is most important to your daily life and well-being. You know how Parkinson’s is getting in the way of the things you want or need to do.
“Remember, you are the one going through the process, so you're the expert on what your experience is — your healthcare team relies on you to share what your concerns may be and what the priorities will be,” said Dr. Nashatizadeh.
Active Participation is Key to Empowered Care
Self-advocacy — understanding what you need, gathering information to make good choices and speaking up for yourself — is a skill; one that gets stronger with practice. Research shows people who speak up about their needs and actively participate during their healthcare appointments experience improved outcomes, increased satisfaction and more cost-efficient healthcare.
“Self-advocacy matters because you are the only consistent member of your healthcare team. You are present throughout your journey, not just during the clinical visits but between the visits,” said Dr. Blake, who is living with Parkinson’s.
Think about what symptoms or challenges you are facing. Do you have concerns about how Parkinson’s impacts your health, relationships or hobbies? Write down the top three things you want to address with your doctor. Consider sharing those priorities with a care partner or family member who may offer valuable insight.
Exploring evidence-based educational resources about your symptoms or concerns beforehand can make your appointment more meaningful.
When you begin an appointment with what matters most to you, your healthcare team can use your needs to guide care decisions.Mention outstanding concerns or questions from your last visit.While the complexity of Parkinson’s can make it hard to know if a health concern is PD-related, it is important to be open and honest.
Before you leave, be sure you understand the details of any recommendations your doctor has made or whether there is anything to watch for with a new medication or therapy. Request referrals to any outside resources or support you need.
Explore Building Your Care Team to become familiar with the specialists who can help address PD symptoms and improve quality of life.
Managing Parkinson’s symptoms often requires taking a team approach — working with different types of experts to address your needs as they arise. Getting and staying organized can help you manage medications, care recommendations and appointments with other specialists. Maintain and regularly update a list of your current medications to share with your healthcare providers at every visit.
This is also a good time to get engaged. If you don’t have an exercise routine, find an activity you love and begin to work it into your daily schedule. Try connecting with other others. Exploring local PD resources or joining a support group can help you build community.
Get the Parkinson’s Foundation Hospital Safety Guide to discover personal care forms and medication schedules.
More Tips for Optimizing Your Care
If you are comfortable including someone, bringing a companion to healthcare visits can be invaluable. Discuss roles before the appointment, so your companion or care partner knows how you prefer them to participate. Participation can help your companion gain a deeper understanding of Parkinson’s. They may also be able to take notes, share unique insights or help you follow through with any recommendations.
While movement symptoms can take center-stage at a PD appointment, Parkinson’s impacts more than movement. Mention any non-movement symptom concerns to your doctor. Anxiety or depression, common in Parkinson’s, can impact your ability to follow through on treatment recommendations. Talk to your neurologist about persistent feelings of sadness or worry.
“Mood should certainly not be discounted or minimized because it's not a motor symptom,” said Dr Rush. “It affects motor symptoms, it affects quality of life, and it affects relationships and functioning.”
Finding the right provider can be a process. If you feel like your healthcare provider isn’t hearing you or addressing your needs, or you leave appointments frustrated, it’s important to take action.
Try addressing your concerns by:
Expressing your needs and expectations at the beginning of each appointment. Bring a written list of your top three discussion topics or ask your doctor about sending your list through the patient portal ahead of your next visit.
Having a friend in your corner. Consider asking a companion to support you or to help explain the details of how PD symptoms, challenges or care needs are impacting you.
Calling the Parkinson’s Foundation Helpline. Our Helpline team can help you prepare ahead of a visit, brainstorm solutions to challenges, or help you explore other care options.
Ganando terreno: La búsqueda por mejorar e introducir nuevos medicamentos contra el Parkinson
El bioquímico Kevin McFarthing recuerda todo acerca de su diagnóstico de la enfermedad de Parkinson (EP). "Me lo diagnosticaron a las 4 p.m. del 10 de diciembre de 2012", dijo. Desde entonces, ha estado tras la pista de una cura, catalogando potenciales terapias contra el Parkinson como coeditor de Clinical Trial Highlights, Journal of Parkinson's y organizando a lista Parkinson's Hope List, una base de datos de más de 350 estudios en curso.
El Parkinson va en aumento. Un estudio apoyado por la Parkinson's Foundation reveló que 90,000 personas en los EE.UU. son diagnosticadas con la enfermedad cada año. Para 2040, más de 12 millones de personas en todo el mundo vivirán con la EP. Las compañías farmacéuticas están interesadas en acelerar una cura. La identificación de nuevas terapias contra el Parkinson es una de las principales prioridades de la investigación y el desarrollo farmacéuticos.
"Todos tenemos nuestra propia visión de lo que podría significar la cura", dijo el Dr. McFarthing. Para algunos, podría ser "una solución mágica para resolver los síntomas y devolver nuestras capacidades a como éramos antes". Otros podrían esperar "un fármaco que brinde otros 10 años de vida sin síntomas".
Los desafíos
Aunque las compañías farmacéuticas están buscando terapias avanzadas para el Parkinson, los costos son elevados y la competencia por la financiación es fuerte. Innumerables medicamentos de prueba fracasan a menudo en el camino hacia un fármaco de éxito para el sistema nervioso central, como la levodopa (la actual terapia de primera línea contra el Parkinson, descubierta hace más de 50 años).
Según el Centro Tufts para el Estudio del Desarrollo de Medicamentos, una terapia para el sistema nervioso central puede costar más de $2 mil millones en investigación y tardar casi un 20% más que otros fármacos en desarrollarse.
El Parkinson es complejo. Los síntomas se manifiestan de forma diferente en cada persona, lo que dificulta un enfoque único para el tratamiento farmacológico. La participación en la investigación es esencial para descubrir las causas de la enfermedad y encontrar nuevos tratamientos para los síntomas que la gente ve —incluyendo el temblor, la rigidez y la lentitud de movimientos— y los diversos no motores que acompañan a la EP.
Investigaciones diversas y la inversión continua también son esenciales. Por suerte, como señala el Dr. McFarthing, "se está realizando mucho trabajo".
En todo el mundo hay más de 100 estudios que exploran formas de mejorar diversos síntomas de la EP. Más de 250 estudios están investigando posibles terapias modificadoras de la enfermedad, tratamientos que podrían ralentizar, detener o invertir el avance de la enfermedad.
Sacando nuevos tratamientos a la luz
Tras identificar un nuevo tratamiento prometedor para una enfermedad mediante estudios observacionales, animales o celulares, los investigadores buscan financiación y participantes para ensayos clínicos. Estos ensayos, cuidadosamente supervisados, se realizan por fases, —normalmente probando un agente activo frente a un placebo—, para determinar su seguridad y eficacia. Por lo general, una terapia prospectiva debe superar con éxito las fases 1, 2 y 3 antes de que la Administración de Alimentos y Medicamentos de los EE.UU. (Food and Drug Administration o FDA, por sus siglas en inglés) decida si una empresa puede presentar una solicitud de nuevo fármaco.
Algunos de los estudios de tratamiento a tener en cuenta son:
Terapias para la discinesia(movimientos involuntarios, erráticos y retorcidos), dirigidas a los efectos secundarios asociados al uso prolongado de la levodopa:
Celon Pharma S.A. obtuvo resultados positivos de fase 2 con su CPL'36 oral, de una sola toma al día. El fármaco dificulta la actividad de la enzima fosfodiesterasa 10a, aumentando los niveles cerebrales de ciertos mensajeros químicos para mejorar el control motor.
Tras finalizar los ensayos de fase 2B, el mesdopetam (IRL790) de IRLAB no alcanzó los criterios de valoración primarios. Los investigadores siguen evaluando su potencial terapéutico. El fármaco bloquea la actividad del receptor D3 de la dopamina, que puede estar relacionado con la discinesia inducida por la levodopa.
La fase 1 de investigación del AV-101 de Vistagen está en curso. El fármaco actúa sobre los receptores de N-metil-D-aspartato (NMDA) que tienen fallas. Unos receptores sanos son fundamentales para la comunicación entre las células nerviosas del cerebro.
Se espera que Sinopia Biosciences inicie los ensayos clínicos de un candidato preclínico a fármaco contra la discinesia: el SB-0110.
Este fármaco maximiza el tiempo en “on”, el periodo en que la levodopa proporciona el máximo control de los síntomas. A medida que progresa el Parkinson, la persona puede experimentar más tiempos en “off". Las terapias destinadas a prolongar el tiempo en "on" incluyen:
Vyalev (Produodopa en Europa), disponible en los EE.UU. desde 2024. Esta nueva formulación de levodopa está dirigida al Parkinson avanzado. Una bomba portátil administra una infusión constante de medicamento bajo la piel, proporcionando un control más constante de los síntomas. Vyalev también puede mejorar la calidad del sueño, los tiempos en "off" a primera hora de la mañana y otros síntomas.
Tavapadon estimula determinados receptores de dopamina para mejorar la función motora y reducir los efectos secundarios. Los agonistas dopaminérgicos actuales no son selectivos y los efectos secundarios pueden incluir comportamientos compulsivos y alucinaciones visuales. Tavapadon proporcionó un buen control de los síntomas en los ensayos de fase 3 como medicación independiente y cuando se utilizó junto con la levodopa. El fabricante, AbbVie, tiene previsto presentar este año una solicitud de nuevo fármaco a la FDA.
La investigación con células madre es un desafío. Implica cirugía cerebral y, tras la implantación de células, se necesita tiempo para ver si los síntomas mejoran. A pesar de los numerosos estudios con células madre para el Parkinson, los investigadores no habían pasado de la fase 2 hasta hace poco:
BlueRock Therapeutics, una división de Bayer, presentó datos positivos de fase 1 sobre bemdaneprocel, una terapia celular que busca sustituir las neuronas productoras de dopamina que se pierden a causa del Parkinson. Con base en estos datos, la FDA concedió al fármaco la designación de terapia avanzada de medicina regenerativa, permitiéndole pasar a los ensayos de fase 3 a principios de 2025.
Algunas de las terapias en investigación prometedoras para detener o frenar la progresión de la EP son:
Factores de crecimiento neurotróficos, moléculas que estimulan el crecimiento de los nervios. Estos podrían beneficiar a las personas con Parkinson. El AB-1005 de AskBio, un factor neurotrófico derivado de una línea celular glial (GDNF, por sus siglas en inglés) administrado directamente al cerebro, puede minimizar la pérdida de dopamina asociada al Parkinson.
Beneficios neuroprotectores potenciales del factor neurotrófico derivado del cerebro y del factor neurotrófico dopaminérgico cerebral.
Los inhibidores de la proteína inflamasona NLRP3 pretenden bloquear la activación de moléculas inflamatorias relacionadas con la pérdida de dopamina en el Parkinson.
Posibles beneficios neuroprotectores de la nicotinamida ribósida, una forma de la vitamina B3.
Los investigadores también están explorando formas de prevenir la acumulación de la proteína alfa-sinucleína, la proteína que forma cúmulos tóxicos, llamados cuerpos de Lewy, en el cerebro de las personas con la EP:
Los estudiso de fase 2 de prasinezumab de Roche, dirigidos a la acumulación y propagación de la alfa-sinucleína. El estudio no alcanzó su objetivo, pero la compañía planea buscar datos que potencialmente muestren beneficios del prasinezumab en el Parkinson inicial.
Annovis Bio Fase 3 concluyó recientemente los estudios sobre buntanetap, un fármaco que reduce la producción de alfa-sinucleína. Buntanetap no alcanzó los objetivos del estudio. No obstante, la empresa tiene previsto seguir investigando el fármaco.
Las mutaciones en el gen GBA (que produce la enzima glucocerebrosidasa, o Gcase) son uno de los más frecuentes factores genética de riesgo de la EP. Varias empresas están investigando si los compuestos que estimulan la actividad Gcase pueden mejorar la función motora u ofrecer neuroprotección.
Se ha demostrado que el Ambroxyl, un medicamento para la tos utilizado para reducir la flema, aumenta la actividad de la Gcase en personas con Parkinson. Puede eliminar los cúmulos tóxicos de alfa-sinucleína. Está en marcha un ensayo de fase 3.
Las mutaciones del gen LRRK2 son la causa más frecuente de la EP genética. Estudios de investigación en cuatro empresas están explorando cómo los inhibidores de la LRRK2 podrían aportar beneficios neuroprotectores. Otras cinco empresas están en fase de ensayos clínicos.
Otras posibles terapias modificadoras de la enfermedad son losagonistas del GLP-1. Principalmente desarrollados para controlar la diabetes, los agonistas del GLP-1 imitan la hormona humana péptido-1, similar al glucagón (GLP-1), que controla el azúcar en sangre y el apetito. Algunos delos estudios recientes sobre agonistas del GLP-1 son:
Terapia con lixisenatida. Los participantes con la EP inicial en el ensayo de fase 2 experimentaron una menor progresión de la discapacidad motora que el placebo a los 12 meses. Sin embargo, muchos participantes experimentaron efectos secundarios gastrointestinales.
La liraglutida mostró una mejoría significativa en algunos síntomas no motores, pero ninguna diferencia en los síntomas motores durante el estudio de fase 2.
La investigación de fase 3 sobre la exenatida demostró que el fármaco era seguro y bien tolerado, pero no mostró ninguna ventaja sobre el placebo en el Parkinson.
Las investigaciones de fase 2 de NLY01, exenatida modificada, no mostraron mejorías en los síntomas del Parkinson.
Los investigadores están a la espera de los resultados de un estudio clínico de fase 2 del Hospital Universitario de Oslo que explora el valor potencial de la semaglutida en el Parkinson.
Construir sobre la esperanza
La única manera de acelerar el desarrollo de tratamientos que puedan ralentizar o detener el Parkinson es a través de una financiación amplificada y continua. El Fondo de Biotecnología Virtual para el Parkinson (Parkinson's Virtual Biotech) , una asociación entre la Parkinson's Foundation y Parkinson's UK, financia 11 nuevos medicamentos y terapias bajo investigación y desarrollo.
La iniciativa Edmond J. Safra Accelerating Clinical Treatments for Parkinson's Disease (EJS-ACT PD, por sus siglas en inglés) tiene como objetivo acelerar las terapias de prueba de fármacos seguros utilizando diseños de ensayos multibrazo y multietapa (MAMS, por sus siglas en inglés), un enfoque más novedoso y rentable.
Los ensayos MAMS permiten a los investigadores evaluar varios tratamientos a la vez contra un placebo. Los investigadores pueden descubrir lo que funciona y descartar lo que no, sin tener que desmontar un ensayo y empezar de nuevo. El objetivo es facilitar una transición fluida y rentable a la siguiente fase de los ensayos y comercializar más rápidamente nuevas terapias eficaces. Hay otros ensayos MAMS para Parkinson en marcha en todo el mundo.
"Esperamos tener más fracasos que éxitos debido a la naturaleza de lo que intentamos hacer", dijo McFarthing. "Pero creemos que algo resultará de esto".
Cómo participar en la investigación sobre el Parkinson:
Parkinson's Foundation: Ambassadors in Action Call (SE Region)
Tuesday, July 22, 2025
6:00 pm ET (5:00 pm CT)
Join us for the launch of Ambassadors in Action—a special 4-part pilot series designed to connect Parkinson’s Foundation Ambassadors, volunteers, and staff to expand education and outreach in our communities.
Each quarterly session will feature staff and volunteer presentations and include a Quarterly Call to Action that highlights key Foundation programs and how volunteers can help amplify their impact.
Topics in this year’s series include:
• Hospital Safety Guide and education program
• Community Neurology Outreach
• Care Partner Guide
• Newly Diagnosed Guide
Whether you're a current Ambassador or looking to get involved, we’d love to have you join us for this exciting new initiative!
Speakers:
Laura Lutrick
Advancement Director,
TNKY Chapter
Annie Long
Senior Director
Community Education & Outreach
Southeast Region
Pain is a common part of life with Parkinson’s disease. It is complex and can take many forms. In this webinar we will review the different types of pain, their causes and various treatment options. You will learn to recognize the difference between general discomfort and true pain and understand how to effectively communicate symptoms with healthcare professionals to improve both comfort and quality of life.
Speaker
Dr. Meaghan Lynch, MD
Physical Medicine & Rehabilitation - Neurorehabilitation
Kaiser Permanente San Francisco, French Campus Neurology Department
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.
Cognitive changes and dementia can be some of the hardest parts of living with Parkinson’s. Thankfully, there are many helpful tools and services beyond medication that can make a big difference.
In this Wellness Wednesday webinar, we’ll explore ways to support safety and quality of life through medical, emotional, and social support. You’ll learn how to build a strong care team—including professionals like psychiatrists, speech therapists, and social workers—and discover community resources like memory cafés and support groups. Walk away with practical tips to better understand and manage dementia-related changes.
Speakers
Erin Cecchi, LMSW, Clinical Social Worker
East Ann Arbor Geriatrics Center
University of Michigan Movement Disorders Program
Mikaela Lowe, MSOT, OTRL, Occupational Therapist
Michigan Medicine
Neuro Rehabilitation Comprehensive Musculoskeletal Center
Brighton Center for Specialty Care
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.
