Sunday, October 20, 2013

World Parkinson Congress Highlights

Linda and I went to the World Parkinson Congress in Montreal recently.  It was our first time attending this amazing event attended by PWPs, care partners, PD organizations, doctors and researchers from all over the world.  The last one was held in 2010 in Glasgow, Scotland.

We arrived on Saturday before the Congress started in order to participate in the Parkinson Disease Foundation (PDF) Parkinson Study Group (PSG) meetings.  There are seven different research groups that address a variety of different PD categories.  This year for the first time, we were invited to participate along with other PAIR (Parkinson Advocates In Research) members to provide "patient input".  We sat in on the Neurosurgical group and Cognitive/Psychiatric group meetings and appreciated the opportunity to interact with doctors and researchers from all over the U.S.

This new development is part of movement toward more patient engagement in the PD world.  It is encouraging for PWPs like me that there is a recognition of the value of including patients in the research process as well as placing an emphasis on patient-centered approaches to medical services.

We attended pre-congress presentations on Tuesday and the opening ceremony on Tuesday night where we heard a variety of very inspirational speeches from organizers and PWPs.  On Wednesday, Thursday, and Friday we attended large group sessions in the morning and then selected two workshops each afternoon on topics of interest.  Between sessions, we spent time on the "floor" of the convention where the PD organizations had booths and hundreds of posters were on display that covered a wide range of subject matter.  There was also a "research village" where I participated on a panel Friday morning.

One of the big topics being discussed was the role of alpha-synuclein in progression of PD and cognitive diseases.  These are proteins that develop into clumps forming lewy bodies.  Part of the discussion involves evidence that these problems may start in the gut and then migrate through the spinal canal to the brain.  Research is also being devoted to slow down or stop the migration of alpha-synuclein from one cell to another causing formation of lewy bodies.

In addition to what we were able to learn, a huge benefit we experienced by attending the WPC was the energy and strong sense of community we experienced there.  It was great to spend time with people we already know and see infrequently, and especially invigorating to meet so many new people that will become part of our network.  At the end of the day, we are one big family all reaching out to support and care for each other in different ways. 

If you were unable to go, you can still visit the WPC website and hear many webinars at that include the opening ceremony, keynote speeches, and cutting edge presentations on a variety of important subjects form world-class presenters.

The next World Parkinson Congress will be held in 2016 in Portland, Oregon.  It is definitely a worthwhile trip!

1 comment:

  1. Thanks, Kirk, for your great report on the WPC 2013. Plans are underway for the WPC 2016 and I look forward to seeing you there. I appreciate your help in spreading the word of the WPC and how invigorating it is to attend this unique Congress, especially since it's only held once every three years.

    Eli Pollard
    Executive Director
    World Parkinson Coalition