Every year, the top neurologists, researchers and experts around the world join together to discuss the latest research and treatments in the Parkinson’s disease (PD) field at the MDS Virtual Congress 2021 hosted by the International Parkinson and Movement Disorders Society. This year, the Parkinson’s Foundation presented six key findings in research, care and education at the international congress.

During the congress, which took place virtually from September 17 to 22, the Foundation’s PD GENEration: Mapping the Future of Parkinson’s study received the special honor of “Top Abstract” and was invited to attend a live panel discussion during the congress.

Below are the six research, care and education findings the Parkinson’s Foundation presented:

Providing Genetic Testing and Genetic Counseling to the Parkinson’s Disease Community: The PD GENEration Pilot Study Experience

Genetic testing for Parkinson’s is not routinely offered as part of standard care, however it can empower people with PD and their care team to improve care. Importantly, better understanding genetics can lead to PD breakthroughs and better treatments. Selected as a “Top Abstract,” this pilot study sought to determine if offering genetic testing and counseling through the PD GENEration study to people with PD is feasible in the U.S.

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The study found that:

• Regardless of whether genetic counseling was provided by a clinician or a certified genetic counselor, study participants were highly satisfied with receiving genetic testing and counseling.
• Satisfaction rates were equally high among people with and without genetic markers of PD.
• There is strong interest within the PD community to receive genetic testing, supporting the expansion of PD GENEration to increase enrollment.

Authors: L. Cook, J. Verbrugge, J. Schulze, T. Schwantes, A. Chan, J.C. Beck, A. Naito, A. Hall, K. Marder, M. Nance, M. Schwarzschild, T. Simuni, M. Wills, R.N. Alcalay

Implementing Systematic Screening and a Treatment Algorithm for Depression in Parkinson’s Disease

Depression is a common symptom of PD that often goes untreated. This study aims to boost quality of life for those living with Parkinson’s and depression by finding a way to address the unmet need of updating clinical practices to improve care and screen for depression. Current practices among neurologists who treat people with PD do not typically involve treatment for depression. This two-year study aims to determine the feasibility of incorporating depression screening for neurologists at five Parkinson’s Foundation Centers of Excellence.

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Authors: C. Marras, A. Naito, J. Beck, R. DeLeon; M. Neault, A. Allen, E. Nelson, S. Luo, S. Mantri, D. Weintraub

A New Phase of the Parkinson’s Outcomes Project Registry Study

The Parkinson’s Outcomes Project, a study tracking and monitoring the care of people with PD over time at select Parkinson’s Foundation Centers of Excellence across four countries, marked a new phase in 2021. The study sought to include participants who increase the diversity of both study population demographics and the diversity in the PD clinical stages.

The study will newly collect data from:

• Underserved and underrepresented racial groups
• People with Young-Onset Parkinson’s disease (YPOD)
• People diagnosed before the age of 50
• Early and late-stage PD
• People who have lived with PD for more than 10 years

The study also aims to provide genetic testing to all participants to better understand the causes of PD. Overall, these efforts will help address crucial gaps in PD research and will lead to improvements in care.

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Authors: A. Naito, M. Neault, R. DeLeon, J. Beck, A. Ramirez-Zamora, N. Dahodwala, M. Rafferty, S. Luo, T. Davis, C. Marras

A Pandemic Care Partner Summit: Online Program Helps Parkinson's Care Partners Take Positive Actions

The Parkinson’s Foundation Care Partner Summit | Cumbre Para Cuidadores was held virtually in 2020 in the height of the COVID-19 pandemic. After the event, registrants completed a survey where they were asked what positive actions they took since watching the summit, and which of their loved one’s PD symptoms has been most challenging for them as a care partner.

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The study found that:

• 94% reported at least one positive action, 79% reported at least two, and 53% reported at least three.
• 67% reported talking to the PD doctor about cognition or mental health
• 57% reported practicing more patience and compassion with their loved one
• 53% reported scheduling time for self-care
• When asked about the most challenging symptom for the care partner, 17% reported cognitive changes, while 16% reported speech and swallowing problems. At 14%, the third most challenging is mental health — a grouping of apathy, anxiety and depression.

Authors: Dianne Perret, Courtney Malburg, Annie Wallis

Pathway to Parkinson's Exercise Education Accreditation Competencies for Exercise Professionals and Exercise Education Programs

Despite the important role played by exercise professionals, there are no unified guidelines or procedures in place to ensure competence of exercise professionals working with people with Parkinson’s. This makes it difficult for people with Parkinson’s and healthcare providers to evaluate the safety and effectiveness of programs and instructors.

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Key takeaways include:

• Our objective was to develop criteria for Parkinson’s exercise educational programs by adhering to new standards of Parkinson’s exercise education.
• The competencies are being used to develop a pilot accreditation program to help reduce unwanted variation in Parkinson’s exercise education.
• This pilot project aims to determine the feasibility of a Parkinson’s Foundation accreditation for Parkinson’s exercise education programs.
• Ultimately, the aim is to create a standard for exercise professionals to competently work with people with PD and ultimately improving the quality of life for those living with PD.

Authors: Miriam Rafferty, Lisa Hoffman, Terry Ellis, Todd Galati, Adrian Hutber, Francis Neuric, Megan Feeney

Care Partners in Parkinson’s: Who calls the Parkinson’s Foundation Helpline and Why?

In this poster, the Parkinson's Foundation Helpline highlights the top reasons care partners contact the Helpline. The study assesses gender differences in the reason for calling or emailing and the time since diagnosis, for a five year period between 2016 to 2021.

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Key findings include:

• Of the 14,186 first-time Helpline callers and emailers, 48% were a spouse/partner and 33% were an adult child. This study focuses on spouses/partners.
• People call the Helpline for many different reasons, and there were no major differences in spouse/partner reasons for contacting the Helpline or for the type of referrals.
• Nearly 82% of spouse/partner Helpline inquiries were regarding men with Parkinson's, despite men accounting for 60% of Parkinson's cases.
• Spouses/partners of women with PD are mostly male, and they are contacting the Helpline less compared to female care partners.
• Because male spouses/partners are contacting the Helpline less often than female, this study suggests a need for increased outreach toward male spouses/partners to help male care partners gain information and resources to support their caregiving. This would have a positive impact on the well-being of women with PD.

Authors: Anna Hedges, Sharon Metz, Linda Pituch, Jill McClure, Dianett Ojeda, Colleen McKee, Amanda Janicke, Tracie Via, Megan Feeney, Adolfo Diaz

Stay up to date with the latest Parkinson’s Foundation programs, research and happenings in our Parkinson’s Today blog.

As a neuroscience professor, Kathy Steece-Collier, PhD, bridges the gap between basic research and treatment. For more than three-decades, her focus on Parkinson’s disease has brought a better understanding of the disease and increased hope for improved treatment. Yet before choosing a path in neuroscience, Dr. Steece-Collier considered a career in special education. It was only after a conversation with Professor Stephen Binkley —  a Nobel Prize winning scientist — that her educational path shifted, leading her to a groundbreaking career in research.

“I found my translational science niche and I became interested in pursuing continuing treatments for people with Parkinson's disease,” said Dr. Steece-Collier.     

Now, as a principal investigator and professor at Michigan State University’s College of Human Medicine, Steece-Collier focuses on the development of improved therapeutics for people with Parkinson’s disease (PD). Her research places particular emphasis on understanding how the brain reacts and remodels itself in response to neurodegeneration (loss of brain cells) and therapeutic interventions.

Half-a-century ago it was recognized that dopaminergic drugs, specifically levodopa, could alleviate many Parkinson’s symptoms. However, over time, complications arose with their continued use — including the development of unpredictable motor responses and involuntary movements known as levodopa-induced dyskinesia. Much research has been implemented over the years in a search to provide relief for this side-effect of PD therapy that involves involuntary and erratic movements, which can occur in the face, arms, legs and/or trunk.

The primary focus of Dr. Steece-Collier’s lab is aimed at understanding dyskinesia side-effects. One project is related to a still experimental therapy that involves using grafts, or transplants, of new dopamine cells placed into the striatum (area of the brain) of patients with PD. While such grafts have been shown to produce clear clinical benefits in some individuals, the results have been inconsistent and, in some, also induced dyskinetic movements — a phenomenon referred to as graft-induced dyskinesias.

Graft-induced dyskinesias are presumed to occur when the newly grafted neurons ‘hook up’ incorrectly within the brain of a person with Parkinson’s. “I became interested in what was causing graft-induced as well as medication-induced dyskinesias. I continue to study these basic biology mechanisms to try and understand what is going on in the brain of individuals with Parkinson’s to limit therapeutic benefits and cause unwanted side-effects,” said Dr. Steece-Collier.   

In 2014, an International Research Grant from the Parkinson’s Foundation allowed Dr. Steece-Collier to delve deeper into a second topic of study in her lab, medication-induced dyskinesias. Her research sought to determine if a specific calcium channel in the brain, which allows calcium to enter nerve cells, contributes to levodopa-induced dyskinesias and whether silencing, or blocking, this channel could alleviate them.

“The Parkinson's Foundation was the first funding organization that had faith in this project. They saw enough promise in it that they gave us the seed money to develop the necessary preliminary data to support the importance of a particular population of calcium channels in the expression of levodopa-induced dyskinesias.”

Dr. Steece-Collier and her research team determined that a ‘gene silencing’ technique to ‘quiet’ these calcium channels could protect against levodopa-induced dyskinesias. This process involves injecting genetic material into a particular region of the brain where calcium channels develop abnormal activity. This gene therapy approach that allows new genetic information to reduce the number of these channels has already shown remarkable progress in successfully alleviating levodopa-induced dyskinesias in an experimental model of PD.

“With the Parkinson’s Foundation funding, we were able to get enough preliminary data that we could then go to the National Institutes of Health to obtain funding for larger functional studies. Indeed, without the Parkinson’s Foundation it is likely that none of this would have been realized.” 

- Dr. Steece-Collier

The greater aim for this research is to provide rationale for the design of clinical trials of gene silencing to reduce the abnormal calcium channel signaling that occurs in the PD brain. Dr. Steece-Collier remains hopeful that the effective and life-changing application of this research will strengthen interest in the development of new therapies that target this specific calcium channel to not only ameliorate dyskinesia side-effects but potentially slow disease progression. “This project is near and dear to my heart, and I hope in the next decade we can take it to clinical trial — that'll be what I'll retire on,” said Dr. Steece-Collier.

Learn more about Parkinson’s Foundation research at Parkinson.org/Research.

Even after years of managing Parkinson’s disease (PD), symptoms may become more challenging to control. Parkinson's Foundation Chief Scientific Officer James Beck, PhD, walks us through how symptoms may change over time and when surgical therapies, such as deep brain stimulation (DBS), may become a better option for those living with Parkinson’s.

Watch the latest Parkinson’s disease videos on our YouTube channel.

Why should I participate in a genetics research study if I already know I have Parkinson’s disease (PD)? In our latest Neuro Talk, Parkinson's Foundation Chief Scientific Officer James Beck, PhD, answers your top questions about the cutting-edge genetics research study, PD GENEration: Mapping the Future of Parkinson’s Disease. This national initiative offers genetic testing for clinically relevant Parkinson's-related genes and genetic counseling at no cost for people with Parkinson’s.

Watch the latest Parkinson’s disease videos on our YouTube channel.

In the context of the COVID-19 pandemic, telehealth medicine has emerged as an essential tool for accessing healthcare. This trend has led to increased demand for evidence-based digital treatments, known as digital therapeutics. In response to the demand, the development of digital therapeutics is being fast-tracked in the scientific research community and utilized among people with Parkinson’s disease (PD). Although anyone can create and offer downloadable wellness apps, digital therapeutics require they be based upon rigorous, evidence-based studies that clinically demonstrate their effectiveness. 

Since digital therapeutics is an evolving, new technology, still lacking extensive data, it is essential that potential real-word benefits and shortfalls be investigated. A recently published study in the Journal of Parkinson’s Disease, titled, “Digital Therapeutics in Parkinson’s Disease: Practical Applications and Future Potential,” (Ellis & Earhart, 2021), explored recent and emerging evidence for using digital therapeutics to facilitate lifestyle changes and motor (e.g., walking) and non-motor (e.g., sleep, anxiety) Parkinson’s symptoms, with the goal of determining whether participant outcomes might be improved.

As part of this research, researchers reviewed multiple studies. Information provided concerning the length of studies, types of studies, study design, study demographics, number of participants and statistical significance varied greatly. Additionally, most studies were not PD population-specific. 

Researchers analyzed the following studies: 

Results

Digital Therapeutics to Improve Walking  

A one-year, single-blinded randomized controlled trial of people with mild to moderate PD in which participants were given a video-taped custom-tailored exercise program designed to help with walking. After uploading the video as a mobile app for their personal use, participants were required to enter personal data related to their adherence to the program, pain, and level of difficulty. This data was monitored remotely by a physiotherapist with whom the participants could message, ask for help, receive encouragement, etc. The physiotherapist would also adapt the exercises based on the progress achieved. 

An increase in daily steps and moderate intensity minutes was experienced by both groups, with clinically meaningful improvement achieved by the less active group.

Digital Therapeutics to Improve Non-Motor Outcomes

A six-session, single-blinded randomized controlled study of 1,711 adults compared digital cognitive behavioral therapy (CBT), delivered via web or mobile, with standard sleep education hygiene, for insomnia on health, psychological well-being, and sleep-related quality-of-life. Treatment consisted of a behavioral component (e.g., relaxation), a cognitive component (e.g., mindfulness) and an educational component (e.g., sleep hygiene). Participants could view their progress, treatment strategies, sleep schedule and educational materials via the platform at their convenience. An interactive, animated virtual therapist provided support and advice based upon the goals set by the patients at the beginning of the study. Participants also uploaded daily data in the form of a sleep diary. 

The CBT approach resulted in a small improvement in functional health and psychological well-being. It also resulted in a large improvement in sleep-related quality-of-life compared with sleep hygiene education — after four weeks and 24 weeks. This study was not conducted among people with PD but suggests potential benefits for people with Parkinson’s.

Digital Therapeutics for Virtual Coaching & Healthy Lifestyle Promotion  

A 12-week study used an artificial intelligence virtual coach to provide instant messaging (to personal devices) focused upon fostering a Mediterranean-style diet and an increase in physical activity. Eighty-one inactive (mostly overweight or obese) adults, ranging in age from 45 to 75 participated in a proof of concept study (testing whether the concept could realistically work). Weekly check-ins concerning participants’ step counts and dietary choices were recorded. 

Physical activity was increased by an average of 109 minutes per week. There was also an overall average weight loss of about 2.8 pounds. Thus, practicality was excellent in terms of recruitment, retention (90% at 12 weeks) and safety. Limitations of this study include a lack of a control condition and a relatively short follow- up period.

What Does This Mean?

The COVID-19 pandemic put the need for remote healthcare in fast-forward. Digital therapeutics — which combines sophisticated technology with evidence-based medicine — shows great promise. It is a meaningful step forward towards more personalized medicine, and could enhance the preferred, more holistic, interdisciplinary approach for managing PD. 

However, there is much work to be done. Digital therapeutics remain underdeveloped and underutilized. In addition, while proof-of-concept studies in the general population are valuable, more studies specific to the PD population are needed. 

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about telehealth, COVID-19 and its impact on the PD population by visiting the below Parkinson’s Foundation resources, or by calling our Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.

• COVID-19 & Parkinson’s
• Parkinson’s Foundation Shares PD GENEration Remote Recruitment Findings at American Academy of Neurology Annual Meeting
• Telehealth and Parkinson's
• Telehealth Use Up Markedly Among Parkinson’s Patients

Why is research important for understanding Parkinson’s disease (PD)? In our latest Neuro Talk, Parkinson's Foundation Chief Scientific Officer James Beck, PhD, outlines the Foundation’s research strategy and some exciting Parkinson’s research being conducted right now. Dr. Beck highlights three key areas of PD research funded by Parkinson’s Foundation grants: biology, neural circuitry and symptoms.

Watch the latest Parkinson’s disease videos on our YouTube channel.

In today’s fast-paced society, with more people spending large amounts of time connected to technology, stress has become the norm. Whether it is short-term, acute stress that comes from situations — such as moving to a new apartment — or long-term, chronic stress caused by long lasting problems — such as ongoing financial or health worries — stress can negatively impact mental and physical health. People with Parkinson’s disease (PD) commonly report that acute stress worsens their motor symptoms, such as freezing of gait, dyskinesia and tremor. People with PD also notice that chronic stress seems to worsen non-motor symptoms, particularly anxiety and depression.

Of note, there are also PD mice studies suggesting that chronic stress can accelerate PD disease progression. A better understanding of how stress impacts PD — and an exploration into possible coping mechanisms — are key to improving PD management.

A recently published study in the journal, Parkinson’s Disease, “Stress and mindfulness in Parkinson's disease - a survey in 5,000 patients” (van der Heide, Speckens, et al., 2021) sought to investigate four questions: 

1. Do people with PD experience more stress than a control group?
2. Which personality and disease characteristics are associated with stress? 
3. Which PD symptoms are especially sensitive to stress? 
4. What strategies might successfully help reduce stress for people with PD — with particular attention to mindfulness (defined in the study as moment-to-moment, non-judgmental awareness). 

Study participants included 5,000 people with PD (average age of 67.3 years, average time living with PD 5.9 years, and 48% women) and 1,292 people without Parkinson’s (average age 60.8 years, 78.0% women). Of those that responded to the survey, 93.9% were Caucasian, 0.5% African American, 1.0% Alaska native, 1.5% Asian, and for 3.0% race was unknown. The majority (82.6%) lived in the U.S. A multitude of well-respected, validated scales were used to measure perceived stress, anxiety, awareness of one’s thoughts and feeling in the moment (dispositional mindfulness), excessive and intrusive negative thoughts (rumination), and self-compassion. Additionally, the study allowed for open-ended feedback from participants, allowing them to list other symptoms affected by stress. 

Results

Understanding the effects of stress:

• People with PD scored significantly worse than those without PD in nearly every category, including anxiety, perceived stress and depressed mood.
• Stress worsened all PD symptoms measured in the survey, including sleeping problems, depression, dyskinesia (involuntary movements), freezing of gait (feeling stuck in place), and bradykinesia (slowness of movement).
• The PD symptom with the strongest stress effect was tremor — experienced by 81.8% of patients.
• Participants with PD with higher stress levels ruminated more, scored lower on quality of life, lower in dispositional mindfulness and lower in self-compassion.
• People with PD under higher levels of stress reported worse disease severity on a daily basis.
• Self-compassion did not differ between people with and without PD.
• People with PD also added to the list of stress symptoms cognitive impairment, loss of focus, confusion, impaired executive function, speech and communication issues, emotional symptoms (anger and frustration, anxiety, nervousness, and apathy, and pain).

Studying stress management methods:

• Exercise (walking, cycling, swimming, sports, yoga, Pilates, or Tai Chi) was most frequently used to reduce stress (83.1%) – with beneficial effects reported on all motor and non-symptoms.
• Mindfulness, practiced by 38.7% of study participants with PD, was linked to improvements in both motor and non-motor symptoms — most notably 60.2% noticed improvement in depression and 64.7% in anxiety. 
• Of the 38.7% of people with PD practicing mindfulness, 85.7% recommended it to others with Parkinson’s.
• The more often mindfulness was practiced by people with PD, the greater the perceived improvement in their Parkinson’s symptoms; approximately half (53.2%) practiced mindfulness at least once a week, and 21.5% practiced once a month or less.
• Mindfulness was experienced as helpful, regardless of PD medication use, and regardless of how long a person had been diagnosed with PD.
• Among the non-mindfulness users, 43.4% were interested in gaining mindfulness skills. 
• Mindfulness users in both groups scored higher on dispositional mindfulness and perceived stress.

These study findings clearly suggest that people with PD experience greater levels of stress than the general population. It is of particular concern that extra sensitivity to stress translated into a significant worsening of both motor and non-motor symptoms. 

Mindfulness (the intentional, active awareness of the present moment, observed without judgment) may improve PD symptom severity. This study demonstrated a significantly positive effect of mindfulness on anxiety and depressed mood. Physical exercise also had a positive effect. Whether or not exercise improved symptom severity in PD directly, by reducing stress, is unclear.

Previous studies have found mindfulness to be a helpful complementary therapy. According to the National Institute of Mental Health, over time, the continued strain on the body from chronic stress may contribute to serious health problems, such as heart disease, high blood pressure, diabetes, and other illnesses, including mental disorders such as depression and anxiety. Chronic stress can also disturb the immune, digestive, cardiovascular, sleep, and reproductive systems, as well as trigger headaches, sleeplessness, sadness, anger, and irritability.

As stated by the study authors, stress has been shown to have a “considerable and detrimental influence on quality of life and on symptom severity” in the PD population. This study also suggests that there are self-management strategies that the PD population can incorporate that are potentially beneficial - particularly mindfulness. However, additional studies are needed with greater diversity of study participants to better understand how mindfulness and physical exercise might be optimized to maximize benefits to motor and non-motor functions.

Learn More

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

• Mindful Mondays
• Emotional & Mental Health
• Stress Management for PD
• Anxiety and PD

2021 was an exciting year for the Parkinson’s Foundation. Thanks to YOU we were able to fund more Parkinson’s disease (PD) research and community programs than ever before!

Here are nine ways we made a positive impact in 2021:

1. Reached 3,000 volunteers

We rely on the energy, skill and passion of our volunteers to advance research toward a cure. This year we reached an impressive 3,000 volunteers who want to help us beat Parkinson’s — from our Parkinson’s Champions to our Moving Day volunteers. Thank you!

Get involved today

2. Invested Additional $10 Million for Research, Care and Education Programs

This investment includes expanding PD GENEration to the Hispanic and Caribbean communities, and $2 million in funding across 143 community grants that support educational and wellness classes.

Find a program near you

3. Shared Key Parkinson’s Genetics Findings at American Academy of Neurology Annual Meeting

This year, we participated in the American Academy of Neurology Annual Meeting, presenting on PDGENEration’s evolution to at-home genetic testing during the COVID-19 pandemic.

Check if you are eligible

4. Surveyed the PD Community On Pressing Topics

In the U.S., cannabis has become more widely available for medical and recreational use. Until this survey, there was insufficient data about the attitudes towards, and experiences with cannabis use among those living with PD.

Check out our survey findings

5. Funded Critical Parkinson’s Research

This year we invested $4.3 million in 29 grants to accelerate cutting-edge Parkinson’s research. Each of these studies has the potential to lead us to the next breakthrough PD therapy or treatment.

Check out the grants we funded this year

6. Published New Veterans Resources and Events

Together, with the U.S. Department of Veterans Affairs (VA), we hosted new online events created for veterans with Parkinson’s and care partners. We also published new tools and information for veterans, such as our new FAQ guide for veterans.

Visit Parkinson.org/Veterans today

7. Launched $30 Million Multi-Year Fundraising Campaign

This fall, we launched Reach Further, a four-year fundraising initiative that will raise an additional $30 million to accelerate Parkinson’s research and increase access to health care and quality-of-life programs.

Help us Reach Further

8. Released new online Care Partner Program

Our new Care Partner Program is a series of self-paced online courses designed with care partners in mind. Courses address top caregiving topics, from preventing caregiver burnout to nutrition.

Find a course now

9. Brought Local Communities Together at Moving Day

We began with virtual and drive through Moving Day events and ended the year strong with safe in-person events. All 47 events brought our local PD communities together.

Sign up for a 2022 Moving Day today

Help us further our reach and impact in 2022.

Donate today.

Did you know that Parkinson’s disease (PD) cases in the U.S. are expected to surpass 1.2 million by the year 2030? In our latest Neuro Talk, Parkinson's Foundation Chief Scientific Officer James Beck, PhD, outlines key statistics related to PD. He also shares insights from the Parkinson’s Prevalence Project, a research study conducted by the Parkinson’s Foundation to calculate the prevalence of Parkinson’s throughout North America.

Watch the latest Parkinson’s disease videos on our YouTube channel.