For years, I lived with a secret. When you are diagnosed with Parkinson’s disease (PD), there is this common, almost overwhelming urge to hide it. Whether it’s the fear of not being accepted or the dread of people looking at you with pity, many of us fight to act “normal.” Trying to mask a diagnosis that has become a huge part of your life is exhausting. It’s hard to be your authentic self when you’re hiding.
I was diagnosed at age 51 in February 2021, right in the heart of the pandemic. At the time, I was working full-time as an educator, leading others through the trials of remote and in-person school. The diagnosis felt like a gut punch during an already impossible season. I kept my diagnosis a secret for over a year — I didn’t even tell my family. I had back surgery during the same time to relieve sciatica, which also caused me to have difficulty walking. This made it easier to hide my symptoms as the sciatic pain masked my rigidity.
Coming out of the pandemic and back into reality, the strain of hiding continued. Eventually, I began to let people in and felt a burden lift. I discovered that people are often far more supportive and less judgmental than I thought. Although I don’t tell everyone I meet that I have PD, I’m becoming more open about my journey, hoping that by sharing my story, I can help someone else live their authentic life a little easier.
Adapting and Moving
While Parkinson’s has affected my left side and made handwriting difficult, I haven't let it stop my voice. I’ve discovered that speech-to-text is a game-changer. It’s more efficient than my old way of writing, allowing my thoughts to flow quickly and freely.
I’ve also learned that movement is medicine. My mobility can feel constrained, so working out is a non-negotiable part of my day. If I skip a workout, I feel the difference. The breakthrough for me was finding a specific Parkinson’s exercise group. Not only has it greatly enhanced my physical ability to function, but it has provided me with a network of "warriors" who are on this same path.
Look for Scott in our new PSA aiming to help people find real answers to their Parkinson’s questions.
What keeps me happy and hopeful? Connection. Spending time with family and friends is the best way to stay healthy, but connecting with my "PD tribe" is critical. There is a deep, unspoken understanding that exists between us. Attending the 2025 Moving Day Chicago was an uplifting experience — seeing so many people thriving and living well was the best kind of fuel for my spirit.
When I got a call to participate in the new Parkinson's Foundation PSA, I realized this was a chance to connect with even more people in the PD Tribe and help make others feel less alone.
My Advice: Find Your People
If you are new to this diagnosis, my biggest piece of advice is this: Find your people. Whether it’s an illness or any other life challenge, finding your tribe is essential. The bond you’ll form with those who truly understand your journey will give you a strength you didn't know you had.
Five years into this journey, I’ve learned that staying active — physically, mentally, socially and spiritually — makes all the difference. Don’t hide; reach out. There is so much life to live!
I’ve waited six years to tell my story. I was diagnosed with Parkinson’s disease (PD) in February 2020, which meant I was navigating this disease and the COVID pandemic at the same time.
I was fortunate to be able to work from home and to have access to health care via telehealth. This gave me an opportunity to slowly adjust to my diagnosis. Sharing that I had Parkinson’s was difficult for me. I told my family and close friends, and eventually trusted colleagues, but I struggled to find the right words.
From the moment I was diagnosed, I made it my mission to learn about Parkinson’s disease and find out what I could do to stay healthy and active for as long as possible. That research began with the Parkinson’s Foundation website.
As someone who has always prioritized fitness, I was relieved to learn that exercise is one treatment that might help slow the progression of PD. I found specialized trainers who work with people with neurological disorders and joined both group classes and one-on-one sessions. Exercise improved my balance and strength and helped me feel better overall. A surprise benefit was discovering a community of like-minded peers who stay active and live with Parkinson’s.
Early on, I formed a team and participated in Parkinson’s Foundation fundraisers such as Moving Day and Parkinson’s Revolution. It felt good to walk or cycle with friends and raise money for a cause that matters deeply to me. I also took on other volunteer roles, because being involved with the community and helping others with PD helps me cope with the disease.
Six years after my diagnosis, I try not to let Parkinson’s disease define me, but I can no longer pretend it does not slow me down.
In 2026, I was honored to participate in the Parkinson’s Foundation PSA to help spread PD awareness. I chose to participate in the PSA because I want people to know that there are things you can do manage this disease and that being involved with the community and helping others with Parkinson's helps me live well with PD. Check out the PSA now.
I am grateful for the support I have from friends and family, and I try to pay it forward by being available to people who reach out to me when they are newly diagnosed and overwhelmed. I mostly listen and then direct them to resources that have helped me.
Explore the many ways you can get involved with the Parkinson’s Foundation to help spread PD awareness.
I was diagnosed with Parkinson’s disease (PD) in 2018. Before my diagnosis, my left arm would not swing, and I shuffled around the house, dragging my left foot. I used to stoop, but now, with the help of exercise and medication, I can swing my arms as I stand tall and walk with big strides. My movement symptoms are under control with exercise and medication, and most of my new acquaintances don’t even realize I have PD.
I have a quiet voice that has become quieter with Parkinson’s, so I make a conscious effort every day to speak with intent. I completed the 10-week Speak Out program with a speech-language pathologist, and now I meet weekly on Zoom to continue working on my voice. It’s more than just speech—it includes reading and cognitive exercises that keep my mind active.
The thought of PD dementia scares me, so I constantly challenge myself with brain puzzles and word games to stay sharp.
Exercise has truly changed my life. I go for a brisk walk every morning because mornings are my best time of day. During the summer, I love swimming in the pool, and throughout the year I work out at the gym with friends. Three times a week I attend Rock Steady Boxing (RSB) for a vigorous, high-energy workout that pushes both my body and mind.
When I joined RSB, I felt like I had already lost some of my strength, my rhythm and even the ability to jump. But boxing gave all of that back to me. I learned the combinations, moved through obstacle courses, jumped rope again and even found myself skipping to the beat of the music. I was hooked — pun intended.
Now I’m a coach for Rock Steady Boxing, and one of my favorite parts of class is leading dance warm-ups. Music and movement bring me joy. I also completed the BIG physical therapy program and still go through it semi-annually. Staying intentional about my routines keeps me independent — I’m grateful to still be able to drive and manage daily life on my own.
I stay involved with the Parkinson’s Foundation through Moving Day Phoenix, where I serve on the volunteer committee. I’ll never forget my first Moving Day walk. I didn’t know what to expect, but seeing so many people gathered together for one purpose was inspiring. It gave me hope, educational opportunities and new ways to adapt. That experience reminded me that Parkinson’s is manageable if you’re intentional about what you do.
A few years ago, I did genetic testing and was relieved to learn I have no known PD markers. It’s comforting to know it may not be passed on directly to my children.
I may have been on the road to somewhere else, but my current place is still beautiful.
I have wonderful friends, workout groups and support systems that keep me grounded. As I often remind others: Parkinson’s isn’t the end — it’s just the beginning of a new normal. And I intend to make this new normal worthwhile.
Check-in & Resource Fair* begins at 10:30 a.m. and the program starts at 11:00 a.m.
Join the Parkinson’s Foundation for the Mid-Atlantic Chapter Parkinson’s Symposium. Attendees will learn about symptoms, treatment options and strategies to help navigate the challenges of living with PD. While each person’s experience is unique, the more you know, the more empowered you will be to play an active role in your care and manage your life with Parkinson’s.
*The Resource Fair will feature local Community Partners that provide services and support for the Parkinson’s Community.
A Partnership event with Virginia Commonwealth University, a Parkinson's Foundation Center of Excellence.
Speakers
Leslie J Cloud, MD
Associate Professor and Director of the Parkinson's Disease Program/Virginia Commonwealth University
Matthew Barrett, MD, MSc
Professor, Division of Movement Disorders/Virginia Commonwealth University
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.
In this webinar, we’ll explore the latest evidence-based treatments available to veterans living with Parkinson’s, including emerging therapies and clinical trial opportunities.
Pull up a chair, pour yourself a cup, and join us for an open conversation with the Parkinson’s Foundation’s Chief Medical Officer, Dr. Sneha Mantri and a guest expert. Our Coffee & Conversation series creates a space for you to ask the questions that matter most. Each session will focus on a specific part of life with Parkinson’s giving you the chance to get clear, trustworthy answers from leading Parkinson’s experts.
Living with Parkinson’s comes with challenges that can feel awkward or uncomfortable to discuss—yet they deeply affect everyday life. In this open conversation, we invite you to bring your questions about topics that often go unspoken: sex and intimacy, incontinence, drooling, constipation, speech and swallowing changes, driving, and impulse control behaviors.
Together, we’ll explore why these issues can be difficult to talk about, how they impact emotional and social well-being, and practical ways to address them with care partners, friends, and healthcare professionals.
Bring your questions. Bring your curiosity. Bring the conversation. Don’t forget your coffee (or tea!).
Speakers
Sneha Mantri, MD, MS
Neurologist, Duke University
Chief Medical Officer, Parkinson's Foundation
Allison Allen, MSW, LCSW
Centers of Excellence Coordinator and Clinical Social Worker
Duke Movement Disorders Clinic
Duke University Medical Center
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.
In this webinar, we’ll explore the latest evidence-based treatments available to veterans living with Parkinson’s, including emerging therapies and clinical trial opportunities.
This article highlights community members who raise funds and awareness for the Parkinson’s Foundation. Learn about:
A family who uses Moving Day, A Walk for Parkinson’s as a fundraiser and celebration of their loved one with Parkinson’s disease (PD).
A Parkinson’s Champion who ran an ultramarathon in honor of family members with PD.
A young musician who was inspired to use her talents to raise awareness for the Parkinson’s community.
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.”
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.”
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.”
Perspectivas profesionales: Cómo puede la genética impulsar la investigación del Parkinson
🧠 ¿Qué aprenderá en este artículo?
Este artículo presenta un video con el neurogenetista Dr. Ignacio Mata, presentando el estudio genético de la Parkinson’s Foundation, PD GENEration, y hallazgos clave a la fecha. Destaca:
Cómo puede un mejor entendimiento de la genética ayudar a impulsar la investigación del Parkinson y desarrollar nuevos tratamientos.
Cómo ha contribuido la comunidad hispana y latina al estudio y nuevos hallazgos.
Cómo inscribirse para participar en PD GENEration.
¿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.
Meet the Researcher Working to Restore Sleep in Parkinson’s
🧠 What will you learn in this article?
This article highlights a researcher working to understand how Parkinson’s disease (PD) impacts sleep. It discusses:
How PD changes neuron behavior in a specific sleep-regulating region.
How results of this study can inform future treatments for sleep issues in people with PD.
How support from the Parkinson’s Foundation makes research like this possible.
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.”
Tomando las riendas: estrategias de autodefensa para aprovechar al máximo las visitas médicas
🧠 ¿Qué aprenderá en este artículo?
Este artículo destaca la importancia de la autodefensa durante la consulta médica para las personas con la enfermedad de Parkinson. Habla acerca de:
Cómo priorizar sus inquietudes antes de entrar en el consultorio de su médico
Cómo prepararse para las citas para lograr una atención más eficaz y optimizada
Cómo aprovechar al máximo el tiempo de conversación con su proveedor médico.
Para muchas personas con la enfermedad de Parkinson (EP), las citas médicas con un especialista suelen ser muy espaciadas, con poco tiempo y repletas de información. Aprender a ser un miembro activo de su equipo de atención médica —dando prioridad a sus inquietudes, preguntas y necesidades antes y durante cada cita médica— puede ayudarle a optimizar el valor de cada consulta.
Dado que no hay dos personas que experimenten el Parkinson de la misma manera, el diagnóstico y el tratamiento pueden ser complejos.Además, el acceso a la atención especializada en Parkinson puede resultar difícil. Aunque en los EE.UU. más de un millón de personas viven con la EP, las investigaciones muestran que hay menos de 700 neurólogos formados en trastornos del movimiento en todo el país. La mayoría de estos especialistas se concentran en zonas urbanas y puede tomar varios meses conseguir una cita.
Las consultas de Parkinson pueden ser rápidas, con mucha información y el intervalo entre citas puede ser considerable. Las prioridades que usted desea cubrir pueden ser diferentes de las que su médico tiene previsto atender. Puede ser frustrante salir de una consulta sin haber hablado de sus principales inquietudes o sin haber comprendido plenamente las recomendaciones de su médico. Adoptar un enfoque activo de su atención médica puede resolver esta frustración y ayudarle a sacar más partido de cada cita.
La atención para el Parkinson es una colaboración. Su equipo médico aporta su experiencia médica a la relación, mientras que usted aporta la suya propia: su experiencia única viviendo con Parkinson y el conocimiento de lo que es más importante para su vida diaria y su bienestar. Ya sabe cómoel Parkinson se interpone en el camino de las cosas que quiere o necesita hacer.
"Recuerde, usted es quien está pasando por el proceso, así que usted es el experto en su experiencia: su equipo de atención médica confía en que usted les comparta sus posibles inquietudes y cuáles serán las prioridades", dijo el Dr. Nashatizadeh.
La participación activa es la clave de una atención empoderada
La autodefensa —entender lo que necesita usted, reunir información para tomar buenas decisiones y hablar por sí mismo— es una habilidad que se refuerza con la práctica. Los estudios demuestran que las personas que hablan de sus necesidades y participan activamente en sus citas médicas obtienen mejores resultados, están más satisfechas y reciben una atención médica más eficiente en costos.
"La autodefensa es importante porque usted es el único miembro constante de su equipo de atención médica. Está presente a lo largo de todo el recorrido, no sólo durante las visitas clínicas, sino también entre citas", dijo la Dra. Blake, que vive con Parkinson.
Antes de una cita médica, tómese un tiempo para prepararse.
Durante su cita, priorice lo que más le importa.
Entre visita y visita, siga las recomendaciones y sugerencias de su equipo y aproveche al máximo su tiempo.
Más consejos para optimizar sus cuidados
Si se siente cómodo incluyendo a alguien, llevar a un acompañante a las citas médicas puede ser muy valioso. Hable de los papeles antes de la cita, para que su acompañante o aliado en el cuidado sepa cómo prefiere que participe. La participación puede ayudar a su acompañante a comprender mejor el Parkinson. También puede tomar notas, compartir puntos de vista únicos o ayudarle a seguir las recomendaciones.
Aunque los síntomas motores pueden ser el centro de atención en la cita de la EP, el Parkinson afecta mucho más que el movimiento. Mencione cualquier síntoma no motor a su médico. La ansiedad o la depresión, frecuentes en la enfermedad de Parkinson, pueden afectar su capacidad para seguir las recomendaciones del tratamiento. Hable con su neurólogo si tiene sentimientos persistentes de tristeza o preocupación.
"El estado de ánimo no debe descartarse ni minimizarse porque no sea un síntoma motor", dijo la Dra. Rush. "Afecta los síntomas motores, afecta la calidad de vida y afecta las relaciones y el funcionamiento".
Encontrar el proveedor adecuado puede ser todo un proceso. Si tiene la sensación de que su proveedor de atención médica no escucha o no atiende sus necesidades o si abandona las citas frustrado, es importante que actúe.
Trate de abordar sus inquietudes:
expresando sus necesidades y expectativas al principio de cada cita. Lleve una lista escrita de sus tres temas de conversación principales o pregunte a su médico si puede enviar su lista a través del portal del paciente antes de su próxima visita.
Tenga un amigo a su lado. Considere pedirle a un acompañante que lo apoye o ayude a explicar los detalles de cómo le afectan los síntomas, los desafíos o las necesidades de cuidados de la EP.
Llame a la Línea de Ayudade la Parkinson’s Foundation. Nuestro equipo de la Línea de Ayuda puede ayudarle a prepararse antes de una consulta, aportar soluciones a los problemas o ayudarle a explorar otras opciones de atención.
Shaping the Future of Parkinson’s Policy: Meet Our Chief Strategy and Policy Officer
🧠 What will you learn in this article?
This article highlights how the Parkinson’s Foundation plans to create change, and protect Parkinson’s research and care, through its new policy efforts. It features:
An interview with our Chief Strategy and Policy Officer, Andi Lipstein Fristedt
Top policy issues for the Parkinson’s community
A sneak peek into the Parkinson’s Foundation advocacy plan
For the first time, the Parkinson’s Foundation is connecting its mission and vision to policy and advocacy work that drives change at the federal and state levels. Through this work, the Foundation aims to shape a future where Parkinson’s disease (PD) research is steadily funded, every person with PD has access to the care and support they deserve, and fewer people develop PD in the first place.
Leading these efforts is Andi Lipstein Fristedt, Executive Vice President, Chief Strategy and Policy Officer. Andi leads the Foundation’s strategic direction and policy initiatives. Andi brings nearly 20 years of leadership experience to the Parkinson’s Foundation. In this interview, Andi shares how she views policy as an opportunity and powerful tool to accelerate progress and create meaningful change — starting now.
1. Can you tell us about your prior policy experience in the health space?
Before joining the Parkinson's Foundation, I spent most of my career in government. Most recently, I served as Deputy Director at the Centers for Disease Control (CDC) where I led the agency’s global health work, as well as its cross cutting offices related to policy, budget, communications and congressional engagement. Before that I was at the Food and Drug Administration (FDA) as Deputy Commissioner for Policy, Legislation & International Affairs where I advanced key policies to strengthen the agency’s regulatory agenda. I previously served on Capitol Hill for almost a decade with the Senate Committee on Health, Education, Labor and Pensions and as Chief of Staff in the Oregon State Legislature.
These diverse experiences fuel my passion to bridge the gap between Parkinson’s research, care and policy at both the state and federal level.
2. Why bring your talents to the Parkinson’s community?
Like so many others, Parkinson’s disease has impacted people I care deeply about. I am excited about the opportunity to come to an organization that understands the people it serves, centers them in the work, and is positioned to drive progress alongside them. I’m here to lead change for people living with Parkinson’s and their care partners. These are challenging times in public policy, but there's a real opportunity to reimagine what’s possible. The federal and state policy landscape gives us opportunity to make short- and long-term changes to strengthen public health and health care for years to come.
3. What are the top policy issues for people with Parkinson’s? How is the Parkinson’s Foundation addressing them?
Right now, the Foundation is advancing a number of policy priorities:
Protecting and advancing the National Parkinson's Project. The National Plan to End Parkinson’s Act was signed into law in 2024, creating the National Parkinson’s Project, and now we’re working to push the administration to implement it in a timely manner. This is the first federal project dedicated to PD research, prevention and care — our policy work will help ensure it delivers real results for people with PD.
Research funding. Parkinson's is the fastest-growing neurodegenerative disease, yet federal funding has not kept pace with its rise. In addition to advocating for more funding at the National Institutes of Health (NIH) and other federal agencies, we're starting to see research funding opportunities in state governments. Our goal is to secure $600 million a year for Parkinson's research at the NIH by 2028. We aim to fully deliver on the promise of this pivotal moment in PD discovery.
“Our goal is to secure $600 million a year of Parkinson's disease research at the NIH by 2028. We aim to fully deliver on the promise of this pivotal moment in PD discovery.”
Environmental health threats. Environmental factors, such as chemicals like paraquat and trichloroethylene (TCE) have been tied to Parkinson's, and this is where policy changes can make a big difference. Paraquat is banned in more than 70 countries, including China, even though they still sell it to the U.S. It's something that we have the power to change by working with the Environmental Protection Agency (EPA) and engaging with state governments.
Helping people access PD care. There's so much work to do here at the federal and state levels, making sure that we're supporting policies that help people with Parkinson’s access timely, quality and affordable care wherever they live. For example, we’ve seen how hard the uncertainty around telehealth coverage has made care for providers and people with PD.
Supporting public health agencies. Public health agencies need the tools and the authority to advance prevention and support new PD treatments and care breakthroughs. This is not a given. We work to ensure the strongest possible public health programs, to ensure that we're moving towards better treatments and a cure for Parkinson's.
4. How can people with Parkinson’s and allies get involved?
There are a lot of opportunities for people with Parkinson's and the people who care about them to engage in policy. Policymakers need to hear your stories and experiences as they are considering policy changes, and we’re working to help people engage with policymakers, year-round.
One exciting opportunity to engage with Congress is coming up March 15 to 18, in Washington, D.C., through our Parkinson's Policy Forum and Day of Action. We will host this event alongside The Michael J. Fox Foundation for Parkinson’s Research and the American Parkinson Disease Association. We’ll be inviting advocates to come to D.C., spend time together as a community and engage lawmakers around key priorities for the Parkinson's community.
But you don’t have to be in Washington, D.C. or a state capital to reach out to your lawmakers, and there are lots of other ways to be involved in advocacy. The Parkinson’s Foundation is building and expanding our platform to share timely action items and help support advocates who want to do that work and make their voices heard.
5. Why should policymakers care about policies that impact Parkinson’s?
Parkinson’s is the fastest-growing neurodegenerative disease, with more than 1 million Americans living with PD and 90,000 new people diagnosed each year. Policymakers have a responsibility to address diseases like PD that impact communities and drive up health care costs. Research for cures has always been, and must remain, bipartisan. When policymakers hear stories from their constituents facing life-altering issues, they listen — especially when those voices unite.
We are at a pivotal moment, with scientific advancements within reach. Now is not the time to pump the breaks — but hit the gas to take advantage of the incredible scientific progress that has been happening to yield real changes for people living with PD. Sustained congressional investment in research and programs leads directly to earlier detection, better treatments, and a cure. And today, we know policy actions by state and federal agencies can protect people from developing PD in the first place.
6. What should people in the PD community tell their Congressperson or State Representative?
Part of the Parkinson’s Foundation policy strategy is showing how policy decisions shape the daily lives of people with Parkinson's and, in turn, ensuring that policy changes reflect lived experience. We need legislators to see a future where new disease-modifying therapies exist, where there are enough specialists to treat people with Parkinson’s, where people are protected from toxic chemicals that contribute to the development of PD and where there's a cure. People with Parkinson’s and their families play a critical role in sharing what these possibilities mean to them.
Lawmakers respond to personal stories — they make this disease tangible. Connecting policy to the realities of living with Parkinson’s is a vital component of our policy work.
7. What gives you hope about helping people with Parkinson’s advocate for policy change?
The community. There are so many people across the country and world, demanding a different future where we think more about Parkinson's disease on a federal and state policy level. The strength and passion of this community is what will ultimately make the difference in the policy space.
8. What’s next for Parkinson’s Foundation policy and advocacy work?
At the Parkinson’s Foundation, we’re focused on policies that improve life for people living with PD today and accelerate progress toward better care and a cure. There's so much change happening across health agencies, and we know that a strong, effective policy strategy will help advance care, research and support for people with Parkinson's.
We’re excited for the Parkinson's Policy Forum and Day of Actioncoming up in March and the launch of our policy priorities.
We also invite our community to help raise PD awareness. Join us at the local level, stay connected with us and share information with friends and family.
Make your voice heard. Sign up today to receive our emails and take part in Parkinson’s Foundation advocacy work. If you already receive our emails, sign in to the Online Supporter Center and opt into Policy emails under Communication Preferences.
