Dr. A. Jon Stoessl, President-elect of the World Parkinson Coalition (WPC) spoke last week at the closing ceremony of the WPC2016, he said, "In the clinic, we focus on what you can't do but at WPC 2016 we see all the things you *can* do." This really resonated with WPC delegates, 1200+ whom live with Parkinson disease (PD). In fact, this one statement has now made the rounds on social media and launched Dr. Stoessl's name in the twittersphere for "getting it."

More than 4,600 people from 67 countries registered to attend the 4th World Parkinson Congress in Portland. They represented all areas of PD, including neuroscientists, clinicians, rehab specialists, people with PD, family members and others. It's the fourth time the community has been brought together on an international level like this and WOW, what an amazing week it was.

Again and again, we heard from neuroscientists during the week and even now, in thank you messages to our office, who reminded us that this meeting is special. It's at the WPC where they hear from, engage with, and just spend time with PwPs, making it one of the most impactful meetings they attend. As I dig through hundreds of emails this week from delegates, I am finding messages such as, "This is a truly unique meeting, not only of extremely high scientific level but also with a humane side to it that I valued very much" and, "We made meaningful contacts that will change the way we operate [our organization]. I really enjoyed the scientific content and saw that even though some of the content was difficult for PLWP to digest, the community saw the enormous effort directed towards the cause..."

The WPC is a safe space, a space where People with Parkinson (PwP) are safe. Safe because they are surrounded by people who understand tremors and freezing and masked faces. No one worries if they are walking fast enough, too dyskinetic, or their hand writing is too small or voice too quiet. We say the WPC is a "tremor safe zone" and we mean it. It's not just tremor safe, it's Parkinson safe. Sara Riggare, WPC Ambassador and PwP wrote,

This week is a haven for us. It's like a get-out-of-jail-free card."

I think she summed up the feeling of many PwPs who attended WPC 2016.

It was a real honor to have the chance to help steer and set in motion this globally impactful Parkinson meeting. We've come a long way since that first WPC in 2006 where PwPs filled the seats as audience members, but were not on the stage or planning committees. The WPC 2016, just 10 years later, had people with Parkinson's involved in EVERY PHASE of the planning. Including sitting on every committee, helping to design the program, select the presenters, blogging, doing outreach, speaking from the stage, staffing the volunteer positions, running the WPC store, training local staff, singing and dancing in the Music & Movement PD Lounge... This Congress is a an incredible Parkinson's experience that started well before we got to Portland and will continue on in the stories, blogs, scientific collaborations, friendships and more for years to come.

How will YOU contribute to the next WPC as we head to Kyoto, Japan in June 2019 for the 5th World Parkinson Congress? Where can we do better and how can you help make sure we actually get better?

Written by Elizabeth (Eli) Pollard- Executive Director at World Parkinson Coalition

Published on September 27, 2016 Linked In