We are People with Parkinson’s for People with Parkinson’s
Resolve Parkinson’s consists of a diverse, highly committed group of individuals dedicated to elevating the voices of those with lived experience of Parkinson’s to inform the way Parkinson’s is understood and treated. Our team consists of five founding members, several of whom have Parkinson’s disease, who serve on our Board of Directors, and several friends of Resolve Parkinson’s who regularly attend working sessions to lend ideas and support to help Resolve Parkinson’s execute its mission.
We live in several countries, we come from very different walks of life, and we’ve all heard the same message from medical personnel when we were first diagnosed:
"We don't know where this comes from; we don't know what it is. You have had this disease for a very long time, and no, we don't know how long. We don't know how it started in your body, and we don't know how long you will live, what kind of impact it will have, or when it will impact your ability to live the life you live now. Statistically, we predict you will probably be lucky and have a few years of quality life left, and no, there is nothing you can do."
We Advocate for Early Intervention
Every one of us has a similar “pre-diagnosis” story – we knew for a long time that “something was not right” and can easily describe similar early symptoms.
We realize that these non-motor symptoms should be recognized and treated as an integral part of Parkinson’s, rather than as unrelated medical events, ascribed to other causes and assigned to providers who know nothing about Parkinson’s. Our lived experience tells us that motor dysfunction is limited to the later stages of what is surely a syndrome, a cascade of seemingly unrelated symptoms that may differ in individuals but are nevertheless recognizable.
With the spotlight on the early symptoms of Parkinson’s Syndrome, Resolve Parkinson’s hopes that the medical and scientific community will come to realize that, while early symptoms don’t merit a visit to a neurologist, there are recognizable patterns of early symptoms that when noticed by patients or other providers should signal further exploration of the possibility of Parkinson’s Syndrome. Early interventions, targeting the health and well-being of patients experiencing non-motor symptoms, may help slow or halt progression before motor symptoms ever begin.
We know that the healthcare system does not prioritize treatments and remedies to reduce the burden of Parkinson’s for patients or society. Because we are viewed as “patients” rather than as experts in our own lived experience, we are relegated to the status of consumers of medication, most of which is based on science that is four decades old and does nothing other than address the most obvious, symptoms of the syndrome. For most of us, our bi-annual medical appointments have been downgraded to a ritual, the object of which is a signature on one or many prescriptions, and tracking of what is accepted as our inevitable decline through “expert observation.” We quickly learn that someone else with a medical degree determines the meaning of our experience, a process in which we have no decision-making role.
We have accumulated years of knowledge of our own condition. We understand how multiple, painful, or debilitating symptoms change according to the weather, in response to what we eat, to stressors, to medication, and to exercise. Sadly, much of this accumulated knowledge of thousands of people remains unexploited, considered by many as anecdotal, subject to the “placebo effect,” or not really part of Parkinson’s even though we know the reality, having experienced it so many times. We value the knowledge, experience, and intelligence of People with lived experience of Parkinson’s, including patients, families, and caregivers.
We believe every patient has a Parkinson’s story and these authentic narratives provide deep insight into how the human body and mind change as the disease evolves. Our goal is to integrate the patient voice and lived experience of Parkinson’s into the healthcare and research ecosystems to improve treatment and find a cure. Our credo, “Helping, Not Helpless,” is an expression of the agency each Parkinson’s patient has to effect real change by sharing their lived experience of Parkinson’s. Our goal is to facilitate this process.
We Seek to Raise Up the Voices of Parkinson's Patients to Effect Change
Partnership is Critical to Our Success
We are committed to becoming a trusted resource of knowledge from people with Parkinson’s Syndrome for people with Parkinson’s Syndrome. We are committed to partnering with research, medical, and nonprofit organizations that support patient communities who share our frustration and our belief that listening to patients is key. By building networks, we will expand our capabilities and accomplish our work.
We currently have two active partnerships:
- We provide mentorship and guidance to leaders of a European *N=11 user group
- We’ve partnered with two U.S.-based organizations to sponsor a clinician/researcher and patient convening in May 2025, the first in a series we call “critical conversations.”
* N=1 research: N refers to the number of unique participants in a particular study. N=1 refers to instances in which the researcher uses him or herself as the sole participant in the study.
We're Committed to Helping People with Parkinson's, Now and Into the Future
We are a legally incorporated non-profit organization with an international reach, run by People with Parkinson’s, for People with Parkinson’s. Resolve Parkinson’s values the knowledge, experience, intelligence, and integrity of PEOPLE living with Parkinson’s Syndrome and champion their expert knowledge and capacity to create and support the development of innovative solutions to resolve their unmet medical needs.
And we seek to challenge the views of those who defend the motor-centric approach that has failed to deliver solutions to resolve Parkinson’s syndrome.
We also understand the need for timely, implementable approaches to bring hope to those suffering from Parkinson’s syndrome now and plan to be a conduit for information that assists those newly diagnosed to create an effective treatment plan.
We welcome like-minded People with Parkinson’s to join us to change the path of Parkinson’s disease from a life-threatening syndrome to a benign condition. Together, we can Resolve Parkinson’s. Join us today.
