In this episode of When Life Gives You Parkinson’s podcast, I talk to people behind several Parkinson’s fundraisers, learn about their experiences with the disease and meet the researchers who benefit from the funds raised.
Last May, on a brilliantly sunlit Sunday morning, my family and I were in the backyard of a West Vancouver home eating porridge. We were also learning about the search for genetic connections to Parkinson’s from a world-renowned gene hunter.
It wasn’t a typical weekend activity for us. We were at a fundraiser called Porridge for Parkinson’s. What struck me was that the people writing cheques were eating and talking to the scientists who were receiving the funds. It was a manifestation of generosity. The person who donates money to further research into Parkinson’s gets a first-hand accounting of how that money is helping the cause. It’s really quite amazing.
At this event, I met Dr. Matt Farrer. He’s a professor of medical genetics and molecular neuroscience at Pacific Parkinson’s Research Centre at the University of British Columbia. I asked him about the importance of fundraising to his research. “It would happen without it,” Farrer said. “Research, unfortunately, wouldn’t happen I don’t think, certainly not at the pace it’s going, without philanthropic dollars.”
Months after that event, I met up with Dr. Farrer in his lab and volunteered to participate in his research project. He took samples of my DNA and mapped my genome. Essentially, I swished mouthwash into a tube, he extracted the DNA, shredded it into a billion tiny fragments, and sequenced each fragment. My genome will then be compared to a reference human genome to look for one specific difference that may be the cause of my disease. Additionally, Dr. Farrer explains that with my permission my data is “de-identified” and uploaded into the cloud for other genetic researchers and neurologists to access for their projects.
“We may find another cause of Parkinson’s disease that is specific to you and maybe one or two other people in the world. Last year, we found a new gene for Parkinson’s in an Italian family and one patient from Saskatchewan. It’s a gene called DNA JC12 and it is absolutely unequivocal we know that causes Parkinson’s disease.”
Since then I’ve attended the charity concert “Shake, Shake, Shake,” joined my family in the Parkinson’s Super Walk, bid on many silent auction items and I’ve seen people sweat and grunt through “Push Ups for Parkinson’s.” It’s all an effort to raise awareness and money for Parkinson’s, in the hopes of finding a cure.
Follow me, Larry Gifford
Follow Co-host and Producer Niki Reitmeyer
Thank you to:
Emily Chambers. You can check out her music at www.emilychambers.ca and follow her for future alerts about “Shake, Shake, Shake.”
Michael Chueng. Check out his site www.teaparky.com and follow him.
For details on Porridge for Parkinson’s and The Pacific Parkinson’s Research Institute www.pacificparkinsons.org and follow them.
Drs. Matthew Farrer, Silke Cresswell, and A. Jon Stoessl at the Djavad Mowafaghian Centre for Brain Health https://www.centreforbrainhealth.ca/. Follow the Centre for Brain Health on Twitter at @DMCBrainHealth.
Dr. Farrer’s researchers Jesse Fox and Emil Gustavason.
And special thanks as always to my wife Rebecca Gifford.
When Life Gives You Parkinson’s was selected as one of Apple’s best podcasts of 2018.
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