06/14/2026
Reflections from the World Parkinson Congress 2026
Now that I've had a couple of weeks to recover from the World Parkinson Congress (WPC), I've finally had time to reflect on everything I experienced, learned, and the incredible people I met along the way.
Looking back, "overwhelming" and "inspiring" are the two words that best describe the week.
From Saturday, May 23 through Wednesday, May 27, I was constantly on the move. Early mornings started around 7:30 a.m. and most days didn't end until 9 or 10 p.m. Between conference sessions, exhibit hall visits, networking events, advocacy discussions, and reconnecting with friends, there was always something happening. Choosing to stay at a hotel near the convention center was one of the best decisions I made because there was simply no downtime.
Adding to the challenge, my Vocal Cord Dysfunction decided to make its presence known throughout the week, leaving me sounding somewhere between a 90-year-old smoker and someone who had completely lost their voice. Despite that, I wasn't about to miss the opportunity to soak in everything WPC had to offer.
Saturday: Learning, Listening, and Storytelling
My WPC experience began as a member of an AbbVie-sponsored advisory panel focused on the Vyalev pump. Seven of us from different countries, including participants from the United States, the United Kingdom, and Norway, shared our experiences with the therapy.
One of the biggest takeaways for me was realizing just how positive my experience with Vyalev has been. Listening to other users discuss challenges they faced reminded me that not every journey with the pump looks the same. I was also fascinated by how differently the therapy is implemented around the world. For example, patients in the UK typically begin treatment in an inpatient setting, while most U.S. patients start as outpatients. The differences in care delivery were eye-opening.
Later that day, I attended a gathering hosted by the nonprofit This Is Parkinson's. I had first connected with the organization during a Box4Bucks event earlier this year and was excited to reconnect with Lisa Volenec, Beth Reynolds, Bob Sullivan, and their incredible team.
Hearing the story behind the organization and learning about their mission to tell the stories of people living with Parkinson's was truly inspiring. The passion and dedication behind their work left a lasting impression on me. Their goal is simple yet powerful: continue telling stories until Parkinson's isn't.
Sunday: Parkinson's Education and Rock Climbing
Sunday began with educational sessions covering the fundamentals of Parkinson's disease, including diagnosis, care partnerships, and personal experiences from those living with the disease.
I left early, however, because I had committed to attending a rock-climbing event hosted by Up ENDing Parkinson's in Gilbert, Arizona. When I arrived, nearly 30 people with Parkinson's and numerous volunteers were ready to climb.
I successfully climbed two walls and had the opportunity to spend time with Molly and Dean from Up ENDing Parkinson's, an organization I've been working with since late last year.
The event reinforced something I've learned repeatedly since my diagnosis: Parkinson's may change how we do things, but it doesn't mean we stop doing them.
I'm also excited to share that I'm planning a fundraising rock-climbing event with Up ENDing Parkinson's and the Parkinson's Foundation in August 2026. More details to come!
That evening, I returned to the convention center for the Opening Ceremony. Along the way, I reconnected with my friend Mark ("Markinthepark21"), and we enjoyed dinner together while catching up on life and our Parkinson's journeys.
Monday: Advocacy and Young Onset Parkinson's
Monday was packed with meaningful conversations and new connections.
I attended a session focused on advancing Parkinson's policy and advocacy efforts, where I had the opportunity to meet several people in person whom I had previously only known online, including Park Doc Julie.
One of the highlights of the day was participating in a Young Onset Parkinson's roundtable discussion. Surrounded by others diagnosed at younger ages, I quickly realized how similar many of our experiences were. We discussed everything from obtaining proper care to overcoming the frustration of having symptoms dismissed by healthcare providers.
The session was led by Movement Disorder Specialist Dr. Bart Post, whose expertise and research on Young Onset Parkinson's added tremendous value to the discussion.
That evening concluded with a Michael J. Fox Foundation gathering attended by people from around the world. Sharing the event with friends from This Is Parkinson's, Up ENDing Parkinson's, Rock Steady Boxing, and others made the experience even more memorable.
Tuesday: Innovation and Community
Tuesday began with a seated dance class. While dancing isn't exactly my thing, participating reminded me of the many creative ways people with Parkinson's stay active and engaged.
Later, I attended an AbbVie session on the Vyalev pump led by Dr. Ospina. The recurring theme from users was clear: make the pump smaller. Many attendees compared its ideal future size to insulin pumps used by people with diabetes.
The exhibit hall became one of my favorite parts of WPC. It was where innovation, education, and community came together.
Some highlights included:
• Having my book signed by Dr. Okun.
• Discovering MimoFit, an interactive system that uses lighted pods to assess and challenge movement and cognitive skills.
• Becoming MimoFit's very first customer—something that almost never happens to me!
• Recording a video for This Is Parkinson's where I was asked what is something positive about Parkinson's.
My answer was easy: the people.
Parkinson's has introduced me to some of the most compassionate, resilient, and inspiring individuals I've ever met.
I also spent time with representatives from both Supernus and AbbVie, companies behind the Onapgo and Vyalev pump therapies. What stood out most wasn't the technology—it was the genuine commitment of people like Marla and Stacy, who simply want individuals with Parkinson's to live their best lives.
The day concluded with a Rock Steady Boxing gathering celebrating coaches, boxers, and the community that continues to support one another.
Wednesday: The Future of Parkinson's Advocacy
Wednesday featured several excellent sessions, including "Hot Topics in Parkinson's" and an exercise-focused presentation featuring Jimmy Choi.
The science behind exercise and Parkinson's continues to be compelling. Not only does exercise help manage symptoms, but research increasingly demonstrates its impact on brain health and disease progression.
Later, I participated in a Young Onset Parkinson's leadership discussion with approximately 20 advocates, care partners, clinicians, and representatives from organizations such as PMD Alliance.
The focus was simple but important: changing the narrative that Parkinson's is only an older person's disease.
Young Onset Parkinson's patients have a powerful voice, extensive social media reach, and the ability to help educate others about what Parkinson's really looks like today.
I felt incredibly honored to be included among such respected advocates and leaders.
Before leaving, I spent time saying goodbye to friends and exhibitors before sitting down with Mark for one last extended conversation. In many ways, that quiet time of connection was the perfect ending to an unforgettable week.
Final Thoughts
The World Parkinson Congress was exhausting, inspiring, educational, emotional, and energizing all at once.
There were moments when the sheer amount of information, activity, and sensory stimulation felt overwhelming. Anyone living with Parkinson's understands how challenging that can be. Yet every conversation, every session, and every new connection reminded me why events like WPC matter so much.
The greatest takeaway wasn't a research presentation, a new technology, or even a specific session.
It was the people.
People living with Parkinson's.
Care partners.
Researchers.
Clinicians.
Advocates.
Volunteers.
Friends.
Together they form a community that continues to educate, support, and inspire one another.
Since returning home, many people have asked if I would attend another World Parkinson Congress.
My answer is simple:
Absolutely. Without hesitation.
The next World Parkinson Congress will be held in Quebec City in 2029, and I fully intend to be there.
I'll need to travel differently and plan carefully, but if WPC taught me anything, it's that the connections, knowledge, and inspiration gained are worth every ounce of effort.
Quebec 2029—count me in.
Rock Steady Boxing Gilbert Shakinginmyboots Esther Park Doc Up ENDing Parkinsons Dean Polsfut Beyond the Brochures: Living with Parkinson's Parkhurst Milow Smart Parkinsons Congress Volenec Michael J. Fox Foundation for Parkinson's Research Pollard Williams
