The Secret Sauce: What Makes WPC The Best Scientific Conference on Parkinson’s in the World?
I’m writing this about two weeks after the 6th World Parkinson Congress in the beautiful city of Barcelona, maybe most famous for the ongoing construction of the cathedral of La Sagrada Familia designed by the genius architect Antoni Gaudi. As expected, it has taken me this long to process the impressions from the many encounters, exchanges, and embraces during the very intense few days of the conference. This was my fourth WPC so I came prepared: shiny newly printed business cards (which my husband kept referring to as coasters because they are square with rounded edges), footwear with BOTH comfort and style, and a sleek and easy-to-open water bottle. I had also, based on hard-earned experiences, planned for the “post-WPC blues” the week after the event, leaving my calendar purposefully open to allow for some well-deserved down-time.
The WPC is where my patient advocacy was born. In early 2010, I had decided that I wanted to combine my patient experiences with my engineering training to help improve things for myself and others with chronic diseases. In September of 2010, I boarded a plane bound for Scotland and the 2nd World Parkinson Congress, where I found my “tribe”. I had already started my advocacy career by “translating” scientific articles into words more accessible to persons living with Parkinson’s and anticipated that I could do the same in the other direction, thereby helping to make research in Parkinson’s even better. In a way, that prediction has come true but not at all in the way I thought. Inspired and strengthened by my experiences at WPC 2010, I went on to start my PhD training, which resulted in my earning my doctorate at Radboud University in the Netherlands in March 2022. The work and research I do today continues to be influenced and inspired by the spirit of the WPC. The recent meeting in Barcelona was the first WPC where I could choose between primarily identifying as a PwP (person with Parkinson’s) or a researcher when registering. I was looking forward to using my dual roles at the conference.
So what is it about WPC that makes it so special? The WPC is first and foremost an international scientific conference for Parkinson’s research of the highest quality. Of course, there are also other conferences for which that is true. But, in addition, WPC is the only scientific conference in Parkinson’s for ALL stakeholders. And this means that the WPC not only invites, but actively welcomes all parties interested in improving the situation for persons living with Parkinson’s disease all over the world. As a result of that, a young basic scientist doing research on a molecular level, after delivering a brilliant 10 minute presentation at WPC on their latest important findings can find themselves being asked a very insightful question on their chosen methods, not only by their usual peers from the scientific community but also by a person living with the condition that their research is ultimately intended to benefit. That kind of interaction changes people. It changes both the person asking the question and the person answering because it makes them understand each other better. It also changes all of us listening to their interaction because it shows us that the way forward is together. It makes us all better humans and it makes healthcare and research better.
Another important factor is that the WPC is truly an inclusive event. I found myself smiling from ear to ear when I saw the big welcoming sign in the lobby of the conference venue: “You are now entering a tremor safe zone”. I know that here, no eyebrows will be raised at my “trusted steed”, my carbon fibre-framed walker with pneumatic tires (I kid you not!). I carry the warmth and camaraderie from each WPC with me between events and when I need a boost sometime, I take out the photos from congresses past to bring the memories back to life. I also do my very utmost to honor my own privilege by whenever I can, do my very best to also represent those who are not present at the WPC. When I speak to other delegates, I try to also take into account those who do not, for some reason, have the ability to attend.
You might think that with all these benefits surely all conferences would be as inclusive and interdisciplinary as the WPC. And an increasing number of conferences are certainly moving in that direction. However, it is not as easy as just inviting all interested, sit back and let the magic happen. With many different backgrounds, perspectives, and priorities in the same room, there will often also be tensions and sometimes even conflicts. The WPC has definitely evolved in the way such tensions are acknowledged and addressed over the years. I will be honest: inviting patients to scientific conferences is not easy. But it is the only way forward if we as a society wants to address the many challenges of acheiving equitable and sustainable health for all. It will be messier and take longer when the “endusers” are involved in every step of the way but the results that we achieve together will be so much better!
And what truly makes the WPC unique is the people, the community. There are very few meetings where the movement disorder specialist who diagnosed the legendary Muhammad Ali with Parkinson’s disease (and also the founding father of the WPC, Dr Stanley Fahn) can be seen sharing a stage with a man with Young Onset Parkinson’s Disease who had recently walked the entire coast of the UK (the late Tom Isaacs) but that was exactly what I was treated to at my first WPC in Glasgow 2010. At every WPC there are new serendipitous meetings later resulting in new connections, new projects, and new research directions. You can read about some of them here:
I’m sure you have all heard the story of the three bricklayers? Some will say that it originates from the time after the great fire of London in 1666. The famous architect Christopher Wren was commissioned to rebuild St Paul’s Cathedral and one day he saw three bricklayers working away. He asked each of them in turn what they were doing. The first man replied: “I am laying bricks” and the second man said: “I am building a wall”. When the same question was asked of the third man, he replied: “I am building a cathedral, it will be a beacon of hope for our whole city and beyond.”
To conclude my reflections from WPC 2023 in Barcelona, the city of the cathedral La Sagrada Familia: the “secret sauce” of the WPC is that each person attending can play a role in building the cathedral of Parkinson’s knowledge together! And I say that both as a person with Parkinson’s and as a scientist.
Let’s meet at the 7th WPC to continue the construction together! I will be first in line to register and I will bring as many colleagues as possible with me!
Sara Riggare, MSc, PhD, served as an Ambassador and as faculty for the third World Parkinson Congress in Montreal, Canada and the fourth World Parkinson Congress in Portland, Oregon and Bracelona, Spain.She is also an advisor to the conference Stanford Medicine X and a member of the British Medical Journal’s Patient Panel. She is an actively engaged patient with a vast network across the community and has her own blog www.riggare.se.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®