A National Resource for Parkinson’s Resilience
About Parkinson’s Resilience Institute
Rather than focusing on medical science, Parkinson’s Resilience Institute aims to help those affected by the disease build personal resilience, raise the bar for support groups for patients and families, and transform the way Parkinson’s care is delivered.
The Institute envisions a future in which every person affected by Parkinson’s disease has access to the knowledge, support, medical care, and community resources they need to navigate the disease with confidence, resilience, and dignity.
Fostering resilience.
Parkinson’s Resilience Institute offers programs that help people adapt, respond, and thrive throughout the Parkinson’s journey.
Redefining support.
We’re creating a set of best practices for support and building a nationwide network of trained and certified facilitators to deliver structured, consistent and psychologically safe Parkinson’s support groups for patients and caregivers.
Transforming care.
We’re creating the Parkinson’s Early Detection Framework (PEDF) to train primary care physicians and doctors in adjacent specialties to employ a simple screening and referral protocol that asks “Could the symptoms I am treating today represent part of a broader Parkinson’s-related spectrum?”
The Institute aims to create unified “Care Clusters” of local and regional specialists who are trained in the interrelatedness of Parkinson’s symptoms and can share data for optimal accuracy in diagnosis and managed treatment plans.
We also intend to build a nationwide network of care navigators to help patients coordinate their care across multiple disciplines, much like those that have become common in cancer care.
The Institute will also develop programs to enhance recruitment of medical students into neurology specialties, particularly Movement Disorder Specialists.
Based in Houston, Texas, PRI is pursuing recognition as a tax-exempt organization under Section 501(c)(3) of the Internal Revenue Code.
Why We Do What We Do
A Parkinson’s diagnosis brings immediate and constant uncertainty that affects every aspect of life. Finding meaningful support and a uniform standard of care is hard. In the midst of confusion and loss, personal resilience is critical.
Our mission is to create a space where the realities of Parkinson’s can be discussed openly and honestly, where people are shown that a meaningful, engaged life is still possible, and the medical community is unified around a more consistent, whole-person approach to patient care.
A Word from Our Founder
My Parkinson’s journey began in 2021 when I started experiencing violent RBD episodes, fatigue, brain fog, apathy, and a host of other vague symptoms I had no idea were connected. It took four years to get a confirmed diagnosis of Parkinson’s disease.
During that time, I watched my health, creativity, and career slowly unravel as I searched for answers without any real guidance.
After I was diagnosed, I began to see that information about the disease, access to specialized healthcare and support, and intimate communities of fellow travelers, were fragmented and hard to find, even in Houston, Texas. Along the way, I met others facing the same uncertainty, and was inspired to help people navigate the disease with greater clarity and support.
I made a commitment in the time I have remaining as a healthy, connected professional to focus my efforts toward solving as many of these deficits in care and support as I possibly could.
My challenge to you is to join me in bringing knowledge, connection and hope to people across America who have been isolated and confused by the lack of consistent support for their Parkinson’s journey.