From Patient to Builder: Building the Future We Wish Existed
One of the things I love most about the World Parkinson Congress is that it brings together people who might not otherwise find themselves in the same room.
Researchers sit beside people living with Parkinson's disease.
Medical professionals learn from care partners.
Students learn from advocates.
Individuals living with Parkinson's share their experiences directly with the scientists and clinicians working to improve treatment and care.
For a few days, traditional boundaries disappear and something powerful happens: everyone becomes both a teacher and a learner.
As I attended the World Parkinson Congress this year, I found myself reflecting on a simple but important question:
What if we approached Parkinson's care this way all the time?
When people talk about the future of Parkinson's disease, the conversation often centers around the next breakthrough. The next medication. The next clinical trial. The next discovery that will bring us closer to slowing, stopping, or someday curing this disease.
Those conversations matter. Research is essential, and every advancement represents hope for millions of individuals and families around the world.
But after years of working alongside the Parkinson's community, I have come to believe that the future of Parkinson's care is about more than treatments alone.
It is about connection.
It is about creating environments where people can learn from one another.
It is about ensuring that every person living with Parkinson's has access not only to medical care, but also to education, exercise, support, purpose, and community.
Most importantly, it is about recognizing that people living with Parkinson's are not simply recipients of care. They are partners in shaping the future of it.
That belief has guided much of my work as Vice President of the National Parkinson's Institute.
While I do not live with Parkinson's disease myself, I have spent most of my life navigating neurological movement disorders. I was diagnosed with Essential Tremor as a child and later with Cervical Dystonia. Living with a movement disorder has given me a unique perspective on the importance of community, understanding, and advocacy. It has shown me firsthand that some of the most meaningful support often comes not from a treatment, but from being understood.
Over the years, I have seen that same truth reflected throughout the Parkinson's community.
Again and again, I have watched people walk into a room seeking information and leave with something even more valuable: connection.
A newly diagnosed individual discovers they are not alone.
A care partner meets someone who truly understands their challenges.
A student gains insight that no textbook could ever provide.
A person who once felt isolated finds a community.
These moments may seem small, but collectively they have the power to transform lives.
That observation led to an important question for our organization:
How do we create more opportunities for meaningful connection?
The answer became the Parkinson's Buddy Program.
In partnership with the University of Louisville School of Medicine, our buddy program pairs first-year medical students with individuals living with Parkinson's disease throughout the academic year. The goal was never simply to teach students about Parkinson's disease. Medical school already does that exceptionally well.
Instead, we wanted students to learn from the people living with it.
We wanted future physicians to understand what happens between appointments. We wanted them to hear the stories, challenges, adaptations, victories, and realities that cannot be captured in a medical chart. We wanted them to understand that every diagnosis belongs to a person with a life, a family, goals, fears, and experiences that deserve to be seen.
In many ways, the Buddy Program reflects the same spirit that makes the World Parkinson Congress so special. It creates a space where learning flows in every direction. Students learn from participants. Participants learn from students. Relationships form. Perspectives change.
What begins as education becomes understanding.
And understanding leads to better care.
This year, having the opportunity to present the Parkinson's Buddy Program at the World Parkinson Congress was especially meaningful because it demonstrated how a simple idea rooted in human connection can resonate far beyond a single community. We spoke with clinicians, advocates, researchers, and organizations from around the world who shared a common belief: healthcare is at its best when people are placed at the center of it.
The conversations we had in Phoenix reinforced something we have long believed: some of the most impactful innovations in healthcare are not technological. They are human.
That same philosophy is driving our next and most ambitious vision.
At the National Parkinson's Institute, we are working toward the development of a first-of-its-kind Parkinson's Health and Research Campus in Louisville, Kentucky.
While the project includes physical space, it is ultimately about something much larger than a building.
It is about creating a destination where exercise, education, research, community, and care exist together under one roof.
A place where someone newly diagnosed can find support.
A place where families can build community.
A place where researchers and clinicians can collaborate alongside the people they serve.
A place where students can learn directly from individuals living with Parkinson's disease.
A place where innovative programs like the Parkinson's Buddy Program can continue to grow.
A place where people can participate in exercise programs, educational seminars, support groups, research opportunities, and community events without having to navigate a fragmented system of services.
In many ways, the vision is an attempt to capture what makes gatherings like the World Parkinson Congress so impactful. The most valuable resource in the Parkinson's community is not a building, a program, or even an organization.
It is the people.
When we bring those people together, remarkable things happen.
As our organization continues to develop this vision, one principle remains at the center of every conversation: the Parkinson's community is not simply the audience for this project. They are helping shape it.
Their experiences matter.
Their insights matter.
Their voices matter.
The most effective solutions are created alongside the people they are intended to serve.
As we look toward the future of Parkinson's disease, there is certainly reason to be hopeful because of the advances being made in research, technology, and treatment. Those breakthroughs will continue to change lives and move the field forward.
But there is another reason for optimism.
There is a growing recognition that community itself is a powerful form of care.
The future of Parkinson's care will be shaped by scientific discoveries.
But it will also be shaped by relationships, collaboration, shared experiences and by people willing to learn from one another.
The Parkinson's Buddy Program began with the belief that relationships matter. Our vision for a Parkinson's Health and Research Campus is built upon that same foundation.
Both represent an effort to create the future we wish existed and where care is comprehensive.
A future where education extends beyond textbooks.
A future where community is recognized as an essential part of health.
A future where no one has to navigate Parkinson's disease alone.
As we left the World Parkinson Congress, our team found ourselves reflecting less on what we had shared and more on what we had learned. Throughout the week, we witnessed what is possible when people living with Parkinson's, care partners, researchers, clinicians, students, and advocates come together with a shared purpose.
Whether through the Parkinson's Buddy Program, a conversation between a student and a person living with Parkinson's, or our vision for a future Parkinson's Health and Research Campus, the goal remains the same: to create opportunities for connection, understanding, and collaboration.
Because when we build with people rather than for them, we create something far more meaningful.
We create the future we wish existed.
Erika Amelia Fernandez Ganong, B.S., NASM-CPT, ISSA-CPT is the Vice-President of National Parkinson’s Institute in Louisville, Kentucky. She was Poster Tour presenter at the WPC 2026 Congress.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®