Launching the WPC blog

I am pleased to be the first writer for the World Parkinson Congress (WPC) Blog, which is being launched this month to honor Parkinson Awareness Month and the 200th birthday of James Parkinson.

In 2004, as we started discussing the idea of a World Parkinson Congress, what it would look like, and who would be invited, there was never a doubt that the whole community would have a seat at the table. I commented to Eli Pollard, WPC Executive Director, “If people don’t come to the first World Parkinson Congress, it won’t be because we’ve failed, but because they aren’t ready for it.” Yet, it seemed to me at the time, after working nearly 40 years in the field of Parkinson’s disease, that the community would be ready if we created the opportunity.  There were plenty of national and international meetings for clinicians and researchers, but no opportunities for people with Parkinson’s and their family members to hear the latest news and exchange ideas with clinicians and scientists. That first World Parkinson Congress in February 2006 brought 3,156 registrants to Washington, D.C., from 56 countries. Clearly the community was ready. Since that launch, subsequent Congresses have grown in size and diversity and now the WPC is heading to Kyoto, Japan, for the Fifth World Parkinson Congress, June 4-7, 2019. This will be the first WPC to be held in a non-English speaking country, presenting a new challenge for us.

What makes the WPC unique is the cross-pollination and interaction among delegates: the opportunity for the stakeholders to hear from each other, sit beside each other, learn from each other, and just connect on a human level. The WPC is not a clinic or a lab, so people with Parkinson’s who attend the Congress aren’t “just” patients. They are people who want to understand the disease they live with, so they come prepared with hard questions for the neuroscientists, clinical researchers, rehab specialists, and others working in the field. It’s exciting for the neuroscientists, who rarely meet people who live with Parkinson’s. As someone who has treated people with Parkinson’s for 40+ years, I have found each WPC inspiring.

This new blog, like the WPC, is unique. It’s not a blog for just one voice. Like the WPC, it will have hundreds of voices. It will include posts from key stakeholders across the Parkinson’s spectrum. It has been designed to give a voice to experts in our field who don’t have the opportunities to tell the broader community their thoughts. Our researchers and clinicians spend so much of their time publishing peer-reviewed publications in academic journals that we rarely get to hear what they think about the science and future of PD. It’s will also be interesting to hear how scientists explain their studies to non-scientists. In this setting, scientists need to justify their work and explain its rationale and how it could eventually help the people with Parkinson’s.

In the months and years to come, you will read posts by some of the world’s most respected Parkinsonologists, neuroscientists, patient advocates and others. Later this month you’ll hear from Professor Roger Barker who will write about “Stem cell transplants and Parkinson's disease - Trials and Tribulations!,” and  Dr. Rebecca Miller, who lives with PD, in her moving piece, “Taking the First Pill.” Later this summer and fall, Dr. Maria Barretto will write about what it’s like delivering care in Mumbai, India, where she works tirelessly to reach underserved communities, and we’ll be treated to a post by Professor Andrew Lees, who will write about where he thinks we’ve gone wrong in research.  These are just a few highlights of the more than 100 authors who will contribute to the WPC blog.

The WPC Blog is being designed like the WPC, inclusively, with something for everyone.  The authors are experts from around the world who have played a part in the WPC as speakers, committee members, Board members, or delegates. Their words will fill the pages and create a unique online library of ideas about Parkinson’s and for sparking discussion and connecting the community – something the WPC does best.

I invite you to join me in marking this blog as a new online resource for learning about Parkinson’s, finding like-minded peers, and finding inspiration.

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Stanley Fahn, MD founded the World Parkinson Coalition® in 2004 and co-chaired the first three World Parkinson Congresses held in 2006, 2010, and 2013. He is the H. Houston Merritt Professor of Neurology and Director Emeritus of the Center for Parkinson’s Disease and Other Movement Disorders at Columbia University in New York City.

Ideas and opinions expressed in this post reflect that of the author solely. They do not reflect the opinions or positions of the World Parkinson Coalition®.

AdvocacyKathleen Jordan