Since its 2019 launch, PD GENEration: Powered by the Parkinson’s Foundation has provided genetic testing and counseling to more than 30,000 people with Parkinson’s disease (PD), empowering them to better understand their genes and family risks. This knowledge also helps advance research. Clinical trials for PD often seek people with specific genetic variants for which a new drug or therapy is designed — an important step toward deepening our understanding of PD.

A new Parkinson’s Foundation pilot program, PD Trial Navigator, connects PD GENEration participants to clinical trials for which they may qualify. With guidance from trained Trial Navigators, people with PD will be able to learn about current clinical trials relevant to them, to support enrollment. Thus, helping advance research toward new therapies and ultimately a cure.

PD Community Feedback is the Compass for PD Trial Navigator

Prior to creating PD Trial Navigator, the Foundation sought to identify what people with PD want from such a program. Evelyn Stevens, Parkinson’s Foundation Senior Director of Research Engagement and Maggie Caulfield, PhD, Director of Research Programs, brought together two focus groups with previous PD GENEration participants to discuss their understanding and interest in clinical trials and personalized medicine.

Key takeaways from the focus groups included:

• Clinical trials seem difficult to join, because of strict eligibility requirements or excessive travel and time needed for participation.
• Communications about research opportunities from neurologists or healthcare partners are mixed and inconsistent, leading to apprehension around clinical trials.
• The term “personalized medicine” is confusing and needs clarification.

“Disease modifying therapies and personalized medicine are approaches that represent a meaningful shift in Parkinson’s care — moving beyond managing symptoms to slowing or stopping disease progression and tailoring research treatment to a person’s unique biology and genetics. Through PD Trial Navigator, we translated focus group insights to build educational resources that help the PD community navigate these approaches with confidence,” said Evelyn.

Dr. Caulfield and Evelyn reviewed the results from the 2024 PD GENEration survey and the 2025 Parkinson’s Foundation State of the Community survey for program-guiding insights. A wide majority of respondents (84%) in the 2024 survey expressed interest in being contacted about clinical trials, with 64% also interested in telehealth trial participation.

The 2025 survey highlighted that most people with PD (52% of respondents) have likely not participated in a clinical trial or research study before but were interested in research updates and relied on digital platforms as their primary resource for PD information.

This valuable input helped the PD Trial Navigator team identify three key educational priorities for the program:

1. Provide illustrative overviews on how disease-modifying therapies work and how they relate to precision medicine.
2. Explain the clinical research process, including eligibility criteria and the importance of placebo groups.
3. Emphasize shared decision-making for informed consent, including care teams and loved ones in the process

This feedback shaped the PD Trial Navigator program, ensuring its design aligns with the needs and priorities of the PD community.

Accelerating Recruitment = Accelerating Research

As PD Trial Navigator helps connect more interested and eligible participants to studies, it will help accelerate trials and research. When less time is spent on recruiting, more time and resources can be devoted to analyzing results and improving future treatment designs.

The NEULARK trial, a Parkinson’s Foundation Industry Consortium Member Study sponsored by Neuron23, is one of the first to benefit from this program in action. Their study requires people with PD and a specific LRRK2 genetic variant or who have overactive LRRK2 activity and who have not begun dopamine medication.

The PD GENEration database, together with Neuron23’s secure, confidential data driven tool, identified more than 2,000 potentially eligible participants, allowing the PD Trial Navigator team to relay the information to the associated healthcare sites to kickstart screening. For those not located at a PD GENEration site, trained Navigators contacted eligible participants directly, offering guidance and answering questions about the process.

"I have only gotten through a portion of the list but have already identified a couple of candidates for NEULARK, a study that is quite challenging to fill. This is a great development and a great example of the potential of PD-gene,” said Joseph Quinn, MD, Vice Chair for Research Parkinson's Center Director at Oregon Health and Science University, a Parkinson’s Foundation Center of Excellence. 

By working with PD GENEration and PD Trial Navigator, Neuron23 can find eligible participants more efficiently, speeding up the research process and getting results to the Parkinson’s community faster. These accelerated timelines could cause an effective treatment to be available years earlier than anticipated, changing the lives of those with PD that could benefit from it.

Navigating Toward a Cure

Where PD GENEration is providing awareness and data around PD-related genetic variance, PD Trial Navigator is taking the next step to empower clinical trial engagement through personalized education and outreach. This program, designed around PD community needs, will inspire and advance PD research toward novel treatments and cures.

Evelyn Stevens and Maggie Caulfield will present a research poster on PD Trial Navigator at two upcoming conferences: the International Conference on Alzheimer’s and Parkinson’s Diseases and Related Neurological Disorders (AD/PD™) in Copenhagen, Denmark, and the 7^th World Parkinson Conference in Phoenix, AZ.

Learn More 

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

• Learn about and enroll in PD GENEration — an international genetics study that provides genetic testing and counseling at no cost for people with Parkinson’s.

• To learn more about PD Trial Navigator, email PDNavigator@Parkinson.org.

• Discover how the Parkinson’s Foundation is Advancing Research

• Explore ways to get involved in the Parkinson’s Foundation — from becoming a research advocate to joining a research study.

Orthostatic hypotension (OH) — a significant drop in blood pressure that occurs when you stand up — is one of the most common non-movement symptoms of Parkinson’s disease (PD). It can cause dizziness, blurred vision, fatigue, and difficulty thinking, which can lead to falls. Generally, OH is also associated with cardiovascular problems (issues with the heart). Together, these risks highlight the importance of understanding how OH impacts health outcomes, especially in people with Parkinson’s.

A new nationwide study, published in Parkinsonism & Related Disorders, explores the longer-term consequences for people with Parkinson’s who experience OH. The study was led by Hikaru Kamo, MD, PhD, a 2025 Melvin Yahr Parkinson’s Disease Clinical Research Award recipient. Dr. Kamo and his research team, based at the University of Florida’s Norman Fixel Institute for Neurological Diseases, also included collaborators from the Parkinson’s Foundation.

Study Results

Using a nationwide insurance claims database, the research team analyzed records from 111,368 adults with Parkinson's disease, of whom 2,598 had a documented diagnosis of OH. After using statistical methods to account for differences between the two groups — such as age, other medical conditions and medications — the team found that people with Parkinson's and OH had a 35% higher chance of experiencing a fall over five years compared to those with Parkinson's alone. They also accumulated more total falls over time.

However, despite long-standing concerns that OH might put extra strain on the heart and blood vessels, the study found no significant link between OH and major cardiovascular events such as heart attack or stroke.

Among those with OH who were taking commonly prescribed medications for the condition, such as midodrine or fludrocortisone, fall risk was 34% higher compared to those not on these drugs, with no added cardiovascular benefit.

However, the study authors suggest that the most likely explanation is that people with more severe OH symptoms are more likely to be prescribed medication for the condition, and as a result are more likely to experience falls regardless of medication use. At this point, it should not be considered a cause-and-effect relationship until additional studies investigate further.

Overall, these findings were consistent across analyses, suggesting that OH in Parkinson's is more likely to lead to problems with falls compared to cardiovascular issues. Therefore, treatment for OH in Parkinson’s should place a strong emphasis on fall prevention.

Highlights

• People with Parkinson's and OH had a 35% higher chance of experiencing a fall over five years compared to those with Parkinson's alone. They also accumulated more total falls over time.
• Despite concerns that OH might strain the heart and blood vessels, the study found no significant link between OH and major cardiovascular events such as heart attack and stroke.
• Among those with OH, people taking common OH medications (such as midodrine or fludrocortisone) had a 34% higher fall risk compared to those not on these drugs, without any added cardiovascular benefit.
• In people with Parkinson’s and OH, fall risk is the main safety concern compared to cardiovascular events.

What does this mean?

This study supports that orthostatic hypotension in Parkinson’s is more of a fall-risk issue instead of a cardiovascular one. While that is reassuring news on the heart-health side, it underscores the importance of addressing fall prevention as a top priority for people living with Parkinson's and OH.

This research also indicates that more studies are needed on the impact of OH medications. Current research suggests that OH medications primarily treat the symptoms of OH, rather than treating the underlying cause of the condition. While these results of this study show that fall risk is higher in people with Parkinson’s taking OH medication compared to those without medication, the authors suggest that this may be a misleading association. To determine a cause-and-effect relationship, further studies on this topic are needed.

How do these findings impact people with Parkinson’s right now?

Overall, the message to the Parkinson’s community is that OH should be viewed primarily as a mobility and safety issue rather than a heart problem. This study adds important evidence about the real-world impact of OH in Parkinson’s and points to the need for better fall-prevention strategies and further study of treatment approaches.

PD care should prioritize fall prevention strategies, regardless of OH status. For people with PD and care partners, this means greater emphasis on lifestyle approaches such as fall-prevention programs, physical therapy, balance training, home safety modifications and knowing if medications can increase fall risk.

If you experience OH symptoms — such as weakness, difficulty thinking, headaches and blurred or dimmed vision — discuss them with your doctor.

Learn More

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

• Fall Prevention in Parkinson’s
• Vertigo, Dizziness & Low Blood Pressure
• Podcast: Understanding Neurogenic Orthostatic Hypotension

As a movement disorders specialist, one issue that people with Parkinson’s disease (PD) often bring up to Sneha Mantri, MD, during office visits is stigma. Stigma stems from stereotypes and lack of understanding that can lead to judgment, delayed diagnosis, isolation and feelings of shame for people with Parkinson’s and chronic diseases.

In our latest Neuro Talk, Dr. Mantri, Chief Medical Officer of the Parkinson’s Foundation, highlights the stigma that can accompany living with Parkinson’s and how it is being researched. Dr. Mantri and the Parkinson’s Foundation believe that combatting stigma through education, storytelling and awareness efforts can help the greater PD community. Dr. Mantri highlights what stigma looks like for people with PD, research findings surrounding stigma and ways to combat it.

What is stigma?  

Stigma is when a person or group is judged or treated unfairly because of a negative belief or stereotype about them. Stigma is associated with stereotypes, prejudice, discrimination and exclusion. Experiencing stigma can significantly impact the lives of people living with Parkinson’s and care partners.

What does stigma look like for people with Parkinson’s?

Stigma around Parkinson’s often begins with misunderstanding. Stereotypes ignore the reality that people of all backgrounds — men and women — live with PD. Visible symptoms like tremors, freezing of gait or speech issues can be misread as intoxication or aging, rather than signs of a complex neurological condition. These reactions can be hurtful and isolating.

Many people with Parkinson’s internalize stigma, leading to delaying treatment, hiding symptoms or their diagnosis out of embarrassment or shame. In the workplace, stigma can fuel fear of being seen as less capable (learn more about employment with Parkinson’s). It can also show up as fear of becoming a burden to loved ones. Acknowledging these experiences is a critical step toward breaking down stigma.

Research Findings Surrounding PD and stigma

Stigma worsens quality of life for people with Parkinson’s. Researching stigma is critical, as bringing academic attention to the topic is critical to addressing it. Research has found that stigma:

• Shapes the PD experience.
• Contributes to social anxiety, isolation, hesitation to seek medical care, loneliness and emotional distress.
• Misconceptions and bias lead to people with Parkinson’s being stereotyped, devalued or even avoided. This, and worsening symptoms over time, can lead to self-stigma, impacting self-esteem and depression.
• Many people with Parkinson’s have experienced a form of stigma.
• Stigma can take many forms. Felt stigma is when someone believes others see them negatively.
• Care partners may experience affiliated stigma, facing bias because they are connected to a person with Parkinson’s.

For doctors and healthcare professionals, understanding stigma’s impact can help them respond with greater empathy and more proactive care strategies. This is crucial people with Parkinson’s and care partners, who often experience their own forms of stress and social isolation.

Ways to Combat Stigma

One of the most powerful ways to reduce stigma is through education and staying connected. The Parkinson’s Foundation works to share information about Parkinson’s to help spread awareness and knowledge, breaking down the misconceptions that fuel stigma. Explore Parkinson’s Foundation resources now.

“As a movement disorders specialist, I talk to patients about stigma. Research shows that practicing narrative medicine — using a patient’s story to guide care — helps their care team address the issues that matter most to them. This approach can strengthen independence and reduce stigma.” – Dr. Mantri

Personal stories (including My PD Stories), humanize Parkinson’s and highlight resilience. While community engagement — through events like Moving Day, support groups or exercise classes — helps people feel less alone and build connection.

Everyone can play a role in reducing stigma by knowing the signs of Parkinson’s, volunteering or sharing information to raise awareness.

Watch Dr. Sneha’s latest Neuro Talk and catch up on past topics at Parkinson.org/NeuroTalk.

Hola, mi nombre es Coran Rivera y soy Promotora de Salud. Actualmente, soy Embajadora de la Parkinson’s Foundation. 

Tengo aproximadamente 8 años trabajando en la comunidad de Chicago y suburbios ofreciendo clases y recursos de salud en la comunidad de la 3ra edad latina.

Mi experiencia laboral me ha llevado a educar, ayudar y convivir con personas de la tercera edad y a romper las barreras del idioma, entre otros determinantes sociales en la salud.

Trabajé en una agencia que ayudaba en la lucha contra el Alzheimer y así es como conocí la Parkinson’s Foundation ya que, al ser tipos de demencia, están relacionadas con las funciones del cerebro que afectan a personas de la tercera edad.

Actualmente, estoy tomando entrenamientos sobre el Parkinson y llevando los recursos a las comunidades latinas y de bajos recursos para romper estigmas de la enfermedad y dando a conocer los avances de la lucha contra el Parkinson.

He podido conocer y convivir con personas que actualmente tienen Parkinson, así como con sus cuidadores y familiares. Me alegra poder ayudarlos con los recursos que ofrece la Fundación. Es importante que sepan que no están solos; que sepan que en la Parkinson’s Foundation hay muchas personas trabajando para lograr tener una cura en un futuro.

Es importante para mí llevar toda esta información en español a mi comunidad latina, ya que aún hay estigmas y miedos que tenemos que quitar acerca de la enfermedad de Parkinson.

Recientemente, pude participar en la elaboración de un anuncio de servicio a la comunidad para la Fundación que se hizo en español e inglés. Para mí, fue emocionante saber que estaba en español porque la información llegará a la comunidad hispanohablante en nuestro idioma.

¡La importancia de este comercial es para que sepan que no están solos y que pueden acercarse a la Fundación y encontrar muchos recursos en español!

¡Espero que puedan compartir con las personas para que sepa que la Parkinson Foundation es una comunidad que los puede ayudar y guiar!

Yo seguiré educándome y llevando los recursos en eventos de salud, presentaciones y participando en la carrera de la Parkinson’s Foundation donde espero conocerlos y platicar.

Parkinson’s disease (PD) care in the U.S. is at a critical crossroads. As the population ages, more people are being diagnosed with PD. The growing number of people living with PD is outpacing the number of neurologists, creating gaps in access to PD care and impacting quality of life for people with PD and their loved ones. The Parkinson’s Foundation is taking action, identifying ways to improve Parkinson’s care on a national scale.

On September 4, 2025, the Parkinson’s Foundation led The National Roundtable on Parkinson’s Care and Innovation in Washington, D.C., with support provided by Manatt Health. The Foundation organized this first-of-its-kind convening with the goal of identifying solutions to address the most pressing national challenges in Parkinson’s care. Participants included people living with PD, care partners, physicians, health care providers, health system leaders, policy experts and innovators across disciplines and industries — inside and outside of the PD space.

Roundtable participants discussed what is and is not working in PD care and what must change to improve outcomes, reduce costs and ease care partner strain. Their discussion resulted in a new multiyear roadmap to transform PD care called Parkinson’s Care and Innovation: A Patient-Centered Agenda for Change.

“The four priorities in care that came out of the roundtable are not one-size-fits-all solutions, they reflect the nuances of living with this disease. These priorities identify practical, actionable steps to strengthen Parkinson’s care, improve coordination and ensure that people with Parkinson’s receive the support they need to live well,” said Chief Medical Officer of the Parkinson’s Foundation, Sneha Mantri, MD, MS.

Below are the four high-impact, actionable solutions to transform PD care in the U.S.:

1. Create networks to support general neurologists and primary care who provide Parkinson's care. 

With only 660 movement disorder specialists practicing in the U.S., most people with Parkinson’s receive their PD care from a general neurologist or primary care provider. These community clinicians often have less experience and expertise in PD.

To ensure that all people with PD have access to high-quality, evidence-based care regardless of where they live or receive treatment, it is critical that we extend PD expertise to community clinicians.

Education and consultation networks that connect community clinicians with movement disorders specialists can provide the support community clinicians need to navigate the complexities of PD diagnosis and treatment. Equipping community clinicians with these resources and tools can help people with PD access high-quality Parkinson’s care closer to home.

Resources available now to help make this a reality:

• People with Parkinson’s and care partners can explore ways to play an active role in optimizing their care.
• General neurologists and primary care providers can explore Parkinson’s Foundation resources and patient education materials.

2. Develop a care model that makes it easier for people with PD to access services they need to live well.

Quality Parkinson’s care uses a team-based approach that focuses on what matters most to the person with PD. PD care should be tailored to each person and connect them to rehabilitative therapies, mental health and complementary medicine.

However, across the U.S., the availability of providers varies, making it difficult for people with PD and care partners to navigate and access services. For example, compared to those in urban areas, people with PD living in rural areas typically have less access to movement disorders specialists and can find it difficult to build a care team trained in PD.

The PD community needs an evidence-based care model that can be adapted to communities across the U.S. Among many positive outcomes, goals of creating this care model include accelerating time to diagnosis, helping people get the services they need, and addressing the impact of care coordination often felt by care partners.

Resources available now to help make this a reality:

• Healthcare practitioners can explore our Paul Oreffice Innovations in Care Awards and nurse fellowships.

3. Make it easier for health professionals to share information across care settings.

Parkinson’s requires care from a variety of health professionals across many care settings. Ideally, when a person with PD moves between doctors and specialists, these providers would be able to share information with one another. However, limitations in current systems and technology make it challenging for clinicians to communicate, even when treating the same person.

To address this challenge, the PD community needs a standardized clinical data set. This universal data set would serve as a common language across all care settings, ensuring that every time a person with PD sees a clinician, that provider can access essential information, such as past and current treatment plans.

A standardized PD data set would allow health care providers to see the full picture of their patient, and better tailor treatment for them. In the long-term, this data set could also help improve our understanding of Parkinson’s and lay the groundwork for future innovations in care.

Resources available now to help make this a reality:

• Make your voice heard. Sign up for Parkinson’s Foundation Surveys.
• The Parkinson’s Foundation Global Care Network connects people diagnosed with PD to expert clinical care that supports their symptoms management and quality of life.

4. Encourage technological developments grounded in real PD experiences.

Every year there are new ways people with PD can use technology to help manage symptoms. A variety of tech-driven tools are now available to support people with PD, care partners and clinicians. However, these tools have not been widely adopted.

Technology has the potential to transform Parkinson’s care — but only if it reflects real-world needs. Tech-driven tools and innovations must be grounded in the lived experiences of people with Parkinson’s and care partners and must generate data that is easily used by clinicians to inform treatment.

The PD community needs a framework that guides innovation and investment in Parkinson’s technology. This framework would identify the most important problems to address, those who would realistically use this technology and the collaboration and investments needed to bring the technology to life. The framework will ensure innovation is centered on people with Parkinson’s and care partners.

What’s Next: How to Implement These Changes

Bringing attention to these four high-impact solutions to transform PD care in the U.S. are only the beginning.

 “This specific, achievable, and robust agenda gives our community a much-needed action plan to address the challenges that so many of us face. Following these steps will make life better for people with Parkinson’s now and in the future. Time is precious and we have no time to waste!"
-Kathy Blake, Chair of the People with Parkinson’s Advisory Council, retired cardiologist and Roundtable participant

Improving Parkinson’s care on a national scale requires bold ideas, working across PD organizations and the continued commitment to make life better for people with Parkinson’s. As a national leader in Parkinson’s care, the Foundation is has built these four priorities into its strategic plan. Through working with policymakers, clinicians, researchers, industry partners and people living with Parkinson’s, the Foundation works to drive change when it comes to care.

Today, the Foundation is working to drive change through policy. Once the National Parkinson’s Project Advisory Council is seated, council members can use these four ways to improve Parkinson’s care in the U.S. as a roadmap to improve health outcomes for people with PD.

The Parkinson’s Foundation is committed to playing a role in advancing these solutions, ensuring the voices of people with Parkinson’s are heard.

To read more insights from the Parkinson’s Foundation National Roundtable on Parkinson’s Care and Innovation explore our Parkinson's Care and Innovation: A Patient-Centered Agenda for Change.

La atención para la enfermedad de Parkinson (EP) en los EE.UU. se encuentra en una encrucijada crítica. A medida que envejece la población, hay más diagnósticos de la EP. El creciente número de personas que viven con la EP está superando al número de neurólogos, creando lagunas en el acceso a la atención de la EP e impactando en la calidad de vida de las personas con la EP y de sus seres queridos. La Parkinson's Foundation está actuando, identificando formas de mejorar los cuidados para el Parkinson a escala nacional.

El 4 de septiembre de 2025, la Parkinson's Foundation dirigió la National Roundtable on Parkinson’s Care and Innovation, (Mesa Redonda Nacional sobre Cuidados e Innovación para el Parkinson) en Washington, D.C., con el apoyo de Manatt Health. La Fundación organizó esta primera reunión de su tipo con el objetivo de identificar soluciones para abordar los desafíos nacionales más apremiantes en los cuidados para el Parkinson. Entre los participantes se encontraban personas que viven con la EP, aliados en el cuidado, médicos, proveedores de atención para la salud, líderes de sistemas de salud, expertos en políticas e innovadores de distintas disciplinas e industrias, dentro y fuera del ámbito de la EP.

Los participantes en la mesa redonda debatieron acerca de lo que funciona y lo que no en la atención para la EP y de lo que debe cambiar para mejorar los resultados, reducir costos y aliviar la tensión de los cuidadores. Su debate dio lugar a una nueva hoja de ruta plurianual para transformar la atención de la EP denominada Parkinson's Care and Innovation: A Patient-Centered Agenda for Change, (Cuidado e innovación para el Parkinson: una agenda para el cambio centrada en el paciente).

"Las cuatro prioridades de atención que surgieron de la mesa redonda no son soluciones “unitalla”, sino que reflejan los matices de vivir con esta enfermedad. Esas prioridades identifican pasos prácticos y factibles para fortalecer los cuidados para el Parkinson, mejorar la coordinación y asegurar que las personas con Parkinson reciban el apoyo que necesitan para vivir bien", dijo la Dra. Sneha Mantri, MD, MS, FAAN, directora médica en jefe de la Parkinson's Foundation.

Las siguientes son las cuatro soluciones de alto impacto y factibles para transformar los cuidados para la EP en los EE.UU.:

1. Crear redes de apoyo para los neurólogos generales y de atención primaria que atienden el Parkinson. 

Con sólo 660 especialistas en trastornos del movimiento ejerciendo en los EE.UU., la mayoría de las personas con Parkinson reciben su atención para la EP de un neurólogo general o de un proveedor de atención primaria. Estos médicos comunitarios suelen tener menos experiencia y conocimientos en la EP.

Para garantizar que todas las personas con la EP tengan acceso a una atención de alta calidad basada en evidencia sin importar dónde vivan o reciban tratamiento, es fundamental que ampliemos los conocimientos en la EP a los médicos comunitarios.

Las redes de educación y consulta que conectan a los médicos de la comunidad con los especialistas en trastornos del movimiento pueden proporcionar el apoyo que los médicos de la comunidad necesitan para navegar por las complejidades del diagnóstico y el tratamiento de la EP. Equipar a los médicos comunitarios con estos recursos y herramientas puede ayudar a las personas con la EP a acceder a una atención de alta calidad para el Parkinson más cerca de casa.

Recursos disponibles ahora para ayudar a hacerlo realidad:

• Las personas con Parkinson y sus aliados en el cuidado pueden explorar formas de jugar un papel activo en optimizar sus cuidados.
• Los neurólogos generales y los proveedores de atención primaria pueden explorar recursos de la Parkinson’s Foundation y materiales educativos para pacientes.

2. Desarrollar un modelo de atención que facilite a las personas con la EP el acceso a los servicios que necesitan para vivir bien.

La atención de calidad para el Parkinson utiliza un enfoque basado en el trabajo en equipo que se centra en lo más importante para la persona con la EP. Los cuidados para la EP deberían adaptarse a cada persona y conectarla con terapias de rehabilitación, salud mental y medicina complementaria.

Sin embargo, la disponibilidad de proveedores varía en los EE.UU., lo que dificulta a las personas con la EP y a sus cuidadores navegar y acceder a los servicios. Por ejemplo, en comparación con las que viven en zonas urbanas, las personas con la EP en zonas rurales suelen tener menos acceso a especialistas en trastornos del movimiento y les puede resultar difícil formar un equipo de atención con formación en la EP.

La comunidad de la EP necesita un modelo de atención basado en evidencia que pueda adaptarse a las comunidades alrededor de los EE.UU. Entre los muchos resultados positivos, los objetivos de crear este modelo de atención incluyen acelerar el tiempo hasta el diagnóstico, ayudar a las personas a obtener los servicios que necesitan y abordar el impacto de coordinar los cuidados, que a menudo experimentan los aliados en el cuidado.

Recursos disponibles ahora para ayudar a hacerlo realidad:

• Los profesionales de atención a la salud pueden explorar nuestros Premios Paul Oreffice Innovations in Care Awards y becas de enfermería.

3. Facilitar a los profesionales de la salud intercambiar información entre centros de atención.

El Parkinson requiere cuidados de diversos profesionales de la salud en muchos entornos de atención. Lo ideal sería que, cuando una persona con la EP alterna entre médicos y especialistas, éstos pudieran compartir información entre sí. Sin embargo, las limitaciones de los sistemas y la tecnología actuales dificultan la comunicación entre los profesionales, incluso cuando tratan a la misma persona.

Para abordar este desafío, la comunidad de la EP necesita un conjunto de datos clínicos estandarizados. Este conjunto de datos universales serviría como lenguaje común en todos los entornos de atención, garantizando que cada vez que una persona con la EP vea a un médico, éste pueda acceder a información esencial, como los planes de tratamiento pasados y actuales.

Un conjunto de datos estandarizados acerca de la EP permitiría a los profesionales de la salud tener un panorama completo del paciente y adaptar mejor el tratamiento a sus necesidades. A largo plazo, este conjunto de datos también podría ayudar a mejorar nuestra comprensión del Parkinson y sentar las bases para futuras innovaciones en la atención.

Recursos disponibles ahora para ayudar a hacerlo realidad:

• Hágase escuchar. Inscríbase para las Encuestas de la Parkinson's Foundation (Parkinson’s Foundation Surveys).
• La Red Global de Atención de la Parkinson’s Foundation conecta a las personas diagnosticadas de la EP con expertos de atención clínica que les ayudan a controlar los síntomas y a mejorar su calidad de vida.

4. Fomentar desarrollos tecnológicos basados en experiencias reales de la EP.

Cada año aparecen nuevas formas en las que las personas con la EP pueden utilizar la tecnología para ayudar a manejar los síntomas. Actualmente existen varias herramientas tecnológicas para ayudar a las personas con la EP, a sus cuidadores y a los médicos. Sin embargo, estas herramientas no se han adoptado de forma generalizada.

La tecnología tiene el potencial de transformar los cuidados para el Parkinson, pero sólo si refleja las necesidades del mundo real. Las herramientas e innovaciones tecnológicas deben basarse en las experiencias vividas por las personas con Parkinson y sus aliados en el cuidado y deben generar datos que los médicos puedan utilizar fácilmente para informar acerca del tratamiento.

La comunidad de la EP necesita un marco que guíe la innovación y la inversión en tecnología para el Parkinson. Este marco identificaría los problemas más importantes que hay que resolver, quiénes utilizarían esta tecnología de forma realista y la colaboración e inversiones necesarias para hacerla realidad. El marco garantizará que la innovación se centre en las personas con Parkinson y en los aliados en el cuidado.

Recursos disponibles ahora para ayudar a hacerlo realidad:

• Explore las herramientas tecnológicas para la vida diaria con Parkinson 

Qué sigue: cómo aplicar estos cambios

Enfocar la atención en estas cuatro soluciones de gran impacto para transformar los cuidados para la EP en los EE.UU. es sólo el principio.

 "Esta agenda específica, alcanzable y sólida ofrece a nuestra comunidad un plan de acción muy necesario para abordar los desafíos a los que tantos nos enfrentamos. Seguir estos pasos mejorará la vida de las personas con Parkinson ahora y en el futuro. ¡El tiempo es oro y no tenemos tiempo que perder!"
-Kathy Blake, presidenta del Consejo Asesor para Personas con Parkinson de la Parkinson’s Foundation (Parkinson’s Foundation People with Parkinson’s Advisory Council), cardióloga jubilada y participante en la mesa redonda.

Mejorar los cuidados para el Parkinson a escala nacional requiere ideas audaces, trabajar a través de las organizaciones de la EP y el compromiso continuo de mejorar la vida de las personas con Parkinson. Como líder nacional en la atención para el Parkinson, la Fundación ha incorporado estas cuatro prioridades en su plan estratégico. A través de la colaboración con legisladores, médicos, investigadores, socios de la industria y personas que viven con Parkinson, la Fundación trabaja para impulsar el cambio en lo que respecta a la atención.

Hoy en día, la Fundación trabaja para impulsar el cambio a través de políticas. Una vez que se constituya el Consejo Asesor del Proyecto Nacional sobre el Parkinson (National Parkinson’s Project Advisory Council), los miembros del consejo podrán utilizar estas cuatro formas de mejorar la atención para el Parkinson en los EE.UU. como hoja de ruta para mejorar los resultados de salud de las personas con la EP.

La Parkinson's Foundation se compromete a desempeñar un papel en el avance de estas soluciones, asegurando que las voces de las personas con Parkinson sean escuchadas.

Para leer más hallazgos de la Parkinson’s Foundation National Roundtable on Parkinson’s Care and Innovation (Mesa Redonda Nacional sobre Cuidados e Innovación para el Parkinson), explore la agenda Parkinson's Care and Innovation: A Patient-Centered Agenda for Change.

In 2025, Moving Day, A Walk for Parkinson’s, Parkinson’s Revolution and Parkinson’s Champions raised a record-breaking $9.82 million to support groundbreaking Parkinson’s disease (PD) research, improve access to quality care and educate more people about Parkinson’s while expanding this supportive, motivated community.

We are inspired by all the people who walk, ride, run and create do-it-yourself (DIY) events to raise Parkinson’s awareness and funds that allow us to advance our mission to make life better for people with PD. Meet Laura, Charlie, Kasey and more community members who help us move toward a cure:

Laura’s Posse Makes Moving Day a Celebration in Her Honor

Keith Morris has helped his wife, Laura, navigate Parkinson’s since she was diagnosed in 2013. When it became more difficult to manage her symptoms in 2019, Keith and his two daughters started looking for additional resources, which led them to the Parkinson’s Foundation and Moving Day Chicago.

“We make it an all-day event that has grown every year. It’s an emotional day for us, and it’s really good for our family. There is a community feel to Moving Day, like we are all in this together. You can’t underestimate that.”

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Charlie Runs Ultramarathon in Support of Parkinson’s Foundation

Charlie Ruff traveled to run the Oregon Cascades 100, an ultramarathon, while raising money as a Parkinson’s Champion. When wildfires forced him to evacuate and cut the race short, he found another ultramarathon to jump into days later. The last miles were difficult, but he pressed on, thinking about his loved ones with PD.

“One step at a time. There is no other option. If you’ve been around someone in the advanced stages of Parkinson’s, I don’t need to make the connection for you.”

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Kasey Inspires Global Support for Parkinson’s Through Parkin-SONG

After learning more about Parkinson’s disease from her dad, a neurologist who treats people with Parkinson’s, Kasey was inspired to take action. She launched Parkin-SONG, a Facebook fundraiser where she performed piano piece to raise awareness and funds for the Parkinson’s Foundation. Friends, family and even professional artists like Gloria Estefan joined in, making the fundraiser bigger than she imagined it could be.

“Being a Parkinson’s Champion means using my voice, my music and my effort to bring comfort, hope and awareness to the Parkinson’s community. It’s amazing to see how something that began from the heart can grow and truly make a difference.”

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¿Sabía que la Parkinson’s Foundation está llevando a cabo un estudio genético actualmente, llamado PD GENEration: Impulsado por la Parkinson’s Foundation? Aprenda más acerca de este innovador estudio y cómo ayuda a las personas con la enfermedad de Parkinson (EP).

Acompañe al neurogenetista Dr. Ignacio Mata, de la Cleveland Clinic, un Centro de Excelencia de la Parkinson's Foundation, mientras destaca el papel de la genética en la investigación de la EP, la importancia de la diversidad en la investigación y cómo pueden ayudar los participantes a mejorar nuestra comprensión de la EP y acelerar el desarrollo de mejores alternativas de tratamiento.

¿Qué es PD GENEration?

PD GENEration es una iniciativa global de investigación de la Parkinson’s Foundation que ofrece pruebas genéticas para los genes relacionados con el Parkinson y la consejería genética sin costo para las personas con la enfermedad de Parkinson, en español e inglés.

¿Por qué participar?

Las pruebas genéticas pueden ser una poderosa herramienta para descubrir las vías biológicas que causan el Parkinson y este entendimiento puede conducir a mejores tratamientos y cuidados para todas las personas con Parkinson.

Al participar en el estudio, los participantes pueden descubrir nuevos conocimientos acerca de su genética, entender los riesgos de su familia y ayudar a beneficiar a las futuras generaciones.

Aprenda más e inscríbase ahora.

Beyond the most visible movement-related symptoms, people with Parkinson’s disease (PD) also experience non-movement symptoms. These symptoms can be debilitating and are sometimes more difficult for care partners to recognize.

One common non-movement PD symptom is difficulty sleeping, often in the form of waking up frequently throughout the night. Pamela Marcott, MD, PhD, a recipient of a Parkinson’s Foundation Postdoctoral Fellowship, is casting a spotlight on the sleep-associated circuits of the brain to understand how exactly PD impacts sleep patterns. By uncovering the mechanisms behind PD-related sleep problems, she hopes to help advance new therapies for such disturbances.

While much of the neuroscience of sleep is still a mystery, researchers do know that staying asleep through the night requires a highly calibrated balance of different signals in the brain. These sleep signals are relayed through brain cells called neurons and can vary in frequency and intensity, depending on their purpose. If these signals become altered and imbalanced, sleep fragmentation occurs with "frequent changes between different sleep and wake states, leading to less consolidated and restful sleep,” said Dr. Marcott.

Under the mentorship of Alexandra Nelson, MD, PhD, and Ying-Hui Fu, PhD, at the University of California, San Francisco, a Parkinson’s Foundation Center of Excellence, Dr. Marcott is investigating how PD changes the behavior of neurons in a specific sleep-regulating region of the brain called the pedunculopontine nucleus (PPN). PPN neurons act like telephone operators, relaying important signals across the brain. Using mice with and without PD-like symptoms, she will measure how the disease affects the ability of PPN neurons to transmit their important sleep signals.

 “Results of this study will improve our understanding of the circuit mechanisms that regulate sleep disturbances in PD, which will inform future therapeutic treatments,” said Dr. Marcott.

After learning more about how PD changes the sleep-related neurons’ signaling ability, Dr. Marcott will then monitor the brains of the mice as they sleep. She will keep a close eye on how the PPN neurons activate during sleep phase transitions, as she believes PD causes these neurons to be overactive and lead to fragmented sleep.

Observing in real time how PD alters sleep regulation in the brain will provide a strong foundation for understanding how to treat this symptom and give restful nights back to people with PD.

“I have been both personally and professionally affected by Parkinson's disease and have dedicated my career to improving the lives of patients living with Parkinson's and their families.” - Dr. Marcott

“This award is a powerful acknowledgment not just of the work I've done, but also of the work I hope to do in the future to improve care for patients with Parkinson's disease,” said Dr. Marcott. “As a physician scientist in this space, I am committed to making meaningful discoveries in the laboratory that will benefit my patients, and I am excited to have the opportunity to start this phase of my career with the support of the Parkinson's Foundation.”

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers.