A Community Legacy of the World Parkinson Congress

The first World Parkinson Congress took place in Washington, D.C. in 2006. Together with a strong legacy component, the concept was simple: create a high level scientific meeting on Parkinson’s disease (PD) that opened its doors to the full community, including people with Parkinson’s (PwP).

While simple in theory, the complexities in planning a totally cross-pollinated meeting, which had never been done before in PD, were numerous. We weren’t sure if this was a one-off Congress, or a would become the triennial Congress it is today. Fortunately, the latter is what emerged and now every three years the World Parkinson Congress draws world leaders in basic and clinical science, care, and advocacy from across the globe. The recent WPC 2016 in Portland, Oregon, our fourth Congress, attracted nearly 4,600 delegates from 60 countries, 26% of whom were people with Parkinson’s.

PD is a chronic neurodegenerative disease that impacts 7 to 10 million people worldwide.1 Considering people may live for decades with PD, family members are very much part of the PD journey, so the number of people directly impacted by a PD diagnosis is probably closer to 40 million. There is a need for the World Parkinson Congresses, but we believe that there is also a responsibility that falls to us with each WPC we plan.

We start planning by asking ourselves how we can make an impact on the host city. We never want to enter a city to just hold our meeting and leave. We believe that it’s our duty to elevate awareness of PD, an often-misunderstood disease, in the host city, before we leave.

Perhaps our biggest impact is made through our “WPC Parkinson’s Ready” program which trains key local community members to better understand PD in order to welcome our delegates, particularly those who live with PD. Our Parkinson’s 101 course introduces PD to front of house staff and first responders who have little to no knowledge of PD. We work with our hotel staff, the convention center, local police officers, local fire fighters, taxi drivers, the airport staff and customs officials who may be the first to greet a PwP after a long flight. We prepare our delegates with brightly colored wallet cards announcing, “I have Parkinson’s” and make sure that they have these cards with their passports when they go through customs, or check into hotels. This alerts the staff that the person in front of them may need extra care, especially if their medications are “off” and they are jetlagged, as exhaustion and stress can exacerbate PD symptoms.

Our Parkinson’s Ready program is one small part of the World Parkinson Congresses, but the impact is profound. Not only do the trainees learn about Parkinson’s, they now have more awareness and increased empathy for people who they work with in the future. These little details matter for our delegates.

This article was contributed by Elizabeth “Eli” Pollard, Executive Director of the New York-based World Parkinson Coalition® / www.WorldPDCoalition.org  

 

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