Transforming care.
Parkinson's symptoms often begin years before diagnosis, and many of the earliest signs aren't recognized as part of the Parkinson's spectrum. Patients can spend years seeking answers before receiving an accurate diagnosis. Even after diagnosis, navigating care can feel overwhelming as appointments, treatments, specialists, therapies, and support services are spread across a fragmented healthcare system.
We’re working to bridge gaps in care.
In many regions, access to quality Parkinson’s care is a real challenge. The majority of dedicated Parkinson's specialists are concentrated in a limited number of metropolitan areas, leaving many people with long travel times, extended wait lists, or no practical access at all. Families are often left to coordinate complex care plans on their own while trying to manage the physical, emotional, and financial realities of living with a progressive disease.
We’re working to make Parkinson’s care more connected, accessible, and patient-centered.
Earlier Detection
Parkinson’s disease often begins years before the motor symptoms that typically lead to diagnosis. During this prodromal period, people may seek care for sleep disturbances, constipation, urinary problems, changes in vision or smell, depression, anxiety, dizziness, pain, and other seemingly unrelated concerns. The Parkinson’s Early Detection Framework (PEDF) is designed to help healthcare professionals across multiple specialties recognize these patterns, identify individuals who may warrant further evaluation, and make appropriate referrals. By extending Parkinson’s awareness beyond neurology, PEDF can help create a path toward earlier recognition and intervention.
The Challenge of Fragmented Care
Parkinson's affects far more than movement, yet treatment of non-motor symptoms is typically delivered by a range of individual specialties. In addition to their neurologist, a Parkinson’s patient may see a gastroenterologist, urologist, sleep specialist, ophthalmologist, physical therapist, and psychologist, all working independently from one another, often without recognizing the conditions they are treating as part of the Parkinson’s spectrum.
This fragmented approach can delay diagnosis, complicate treatment decisions, and place an enormous burden on patients and caregivers. We envision a future where healthcare professionals across disciplines share a deeper understanding of the full Parkinson's spectrum and work together to provide more coordinated care.
The Need for a Guidance System
A Parkinson's diagnosis often launches patients and families into a maze of appointments, treatment options, insurance questions, support resources, and difficult decisions.
In many healthcare settings, there is no single person responsible for helping patients navigate that journey. As a result, individuals are often left to coordinate their own care while managing the daily challenges of living with the disease. We believe people deserve knowledgeable guidance and continuity of support throughout every stage of their Parkinson's experience, and envision a Care Navigator system peopled by trained professionals, similar to the Cancer Care Navigators that have become common in oncology.
Addressing Critical Workforce Shortages
Across most of the country, access to Movement Disorder Specialists remains limited or nonexistent. As the population of people living with Parkinson's continues to expand, the shortage of specialized expertise presents a significant challenge for patients, providers, and healthcare systems alike.
Meeting this need will require new approaches that expand access to expertise, strengthen the specialist pipeline, and make high-quality Parkinson's care available to more communities, especially in “MDS deserts.”
Supporting the Whole Person
Parkinson's can bring isolation, emotional strain, and practical challenges that extend far beyond medical needs. Many individuals require help with daily living, transportation, social connection, and ongoing support as the disease progresses.
We believe care should address the whole person, not just clinical symptoms. Building stronger systems of support can help people maintain independence, dignity, and quality of life throughout their journey.
Creating Change
Transforming Parkinson's care will require collaboration across healthcare, education, community organizations, policymakers, and advocates. It will require new models, new partnerships, and a commitment to addressing gaps that have existed for far too long.
The Institute is working to help build a future where Parkinson's care is easier to access, easier to navigate, and better equipped to meet the needs of every person and family affected by the disease.
As we work to create transformative solutions, we invite you to sign up below for notifications, updates, early previews and launch announcements.