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Benjamin Stecher was just 29 and living in China when he was diagnosed with Parkinson's disease (PD).
"When you get it, you have it for life, and the only thing you know is that things will get worse as time goes by," says Benjamin, who is now 34.
"It's not easy figuring out how to move on with life as a young man faced with that kind of fate."
Benjamin decided to turn his diagnosis into action.
He writes a blog about his life with Parkinson's and travels to research labs all over the world to meet with top scientists and doctors working on PD research.
"There is no cure for Parkinson's disease, there aren't even any treatments proven to slow progression," Benjamin writes in his blog. "These men and women have given me hope that soon enough we will have more effective treatments for this and other diseases."
Benjamin, and more than 150 other speakers and participants from 14 countries, last week attended the "Krembil Knowledge Gaps in Parkinson's: Revision vs Reconstruction" symposium in Toronto.
Addressing 'identity crisis' in field of Parkinson's disease
The symposium – a high-level brainstorming session designed to bring the top minds in PD research together to debate how best to speed up discovery, in the hopes it could lead to a disease-modifying therapeutic option for patients, as well as new treatments – was sponsored by UHN's Krembil Brain Institute.
"Knowing the clinical complexities about Parkinson's disease, knowing that we likely aren't dealing with a single disorder, can we simply make a revision in our current course of research and treatment for patients with PD, or do we need to completely reconstruct our approach in order to move forward?" asks Dr. Anthony Lang, a neurologist and Senior Scientist with the Krembil Brain Institute and Director of the Movement Disorders Clinic at Toronto Western Hospital.
"This is the big challenge now," says Dr. Lang, lead organizer of the symposium.
The event was designed to address what might be described as an "identity crisis" in the field of Parkinson's disease, says Dr. Alberto Espay, a neurologist with University of Cincinnati and a member of the symposium's steering committee.
Talks ranged from why a "one-size fits all" approach in PD won't work to re-thinking the design of clinical trials to potentially include multiple therapies, and the role of inflammation and potentially, the microbiome, in the disease. Conversation – and debate – flowed freely.
"I'm happy to see that there are people who are willing to speak openly about what their beliefs are," says Benjamin. "There were some lively debates and comments.
"Hopefully we can have more people challenging other peoples' points of view and really push PD research forward."
According to the Global Burden of Disease study, Parkinson's is the fastest growing neurological disorder in the world. More than 12 million people worldwide will be diagnosed with PD by 2040. That's why aligning efforts among researchers right now, is key. The question is how?
Out of 17 Phase 3 clinical trials in Parkinson's, zero have been successful.
"Why have we failed?" asks Dr. Espay? "That's what we want to know – and what we want to change.
"The answers to our most important questions depend on whether our views on Parkinson's are 'revised' or 'reconstructed.' So, the timing of this discussion is critical."
Lots of interaction and disagreements
Dr. Antonio Strafella, a neurologist and Senior Scientist with the Krembil Brain Institute, and moderator of the event, agrees.
"There has been a lot of interaction – and a lot of disagreements - at the symposium," he says. "But that's what we need, that's what is important in order to move the field toward a cure for our patients."
Benjamin will continue to advocate for Parkinson's research – and for patients like himself – while remaining optimistic about the potential for a cure one day.
"The study of the human brain, and what goes wrong with it, is our greatest and most challenging frontier," he says.
"I find myself oddly grateful to have been given front row seats in our collective journey to tackle the most difficult puzzle we have ever faced."