Thanks to donors like you, every year, Parkinson Canada invests more than $1 million into new research studies aimed at pinpointing the causes of Parkinson’s and treating its symptoms, slowing disease progression, and improving quality of life.
This year, we received a remarkable and transformational gift from a couple whose lives have been touched by Parkinson’s, a gift that will have a lasting impact on Parkinson Canada’s ability to advance its mission.
Tony Zwig and Thea Caplan have donated $750,000 to Parkinson Canada, a contribution that will help us not only to continue offering hope and support to people living with Parkinson’s today but also empower us to drive research innovation towards personalized treatments for people with Parkinson’s and ultimately, a cure through the Canadian Open Parkinson Network (C-OPN).
Tony and Thea kindly shared the story of what inspired this generous donation. Many facets of it will be recognizable to those living with Parkinson’s or family members and care partners.
Tony’s mother lived with Parkinson’s until she passed away at the age of 88. She was also diagnosed with Lewy body dementia, a progressive dementia that leads to a decline in independent function. As Tony relates, the combination was challenging for his dad, who was one of the primary care partners for his mother at home.
“It was a 24/7 job for my father to care for my mother, and he was getting worn down – he was having a tough time. And I happened to see some literature about support groups, so I accompanied my father to the Parkinson Canada offices, where we took a course from a wonderful nurse.”
Tony and his father were impressed by the Parkinson Canada workshop, but they were also moved by the experiences of the other care partners present. He and Thea noticed a remarkable change – Tony’s father, a private man, opened up to the idea of external help.
“I saw how this experience benefitted my dad, particularly being introduced to the idea that he had to also take care of himself,” says Tony. “That if he got sick, it wasn’t going to do my mother any good, so it was beneficial to take some breaks, some time away. It worked for him. And that is how I was introduced to Parkinson Canada.”
Thea, whose father had Guillain-Barré syndrome, a neurological disorder where the body’s immune system attacks the peripheral nervous system, shares with Tony a belief in supporting progressive research that utilizes the advances of technology and data, particularly as it relates to collaboration across networks of medical researchers.
“Sometimes diagnoses share clinical characteristics, so there might be interconnections, or constellations of interactions, like common genes or RNA proteins. And when you have massive amounts of data to analyze, it may be easier to identify those connections. But if researchers are working in their silos, it’s less likely to happen. So, the more collaboration, the better.”
Tony shares his and Thea’s thoughts upon learning about C-OPN. “I think what resonated for us about C-OPN was the idea of sharing data across research centres, which will enhance their capacity to innovate and uncover the answers.”
Thea picks up on another part of the C-OPN initiative that she finds personally meaningful – the need for people living with Parkinson’s to take part in research via their genetic material.
“My father, who ultimately died from Alzheimer’s, spent time at Baycrest, a long-term care residence and a research and teaching hospital for the elderly.”
Thea would have liked her father’s participation in genetic research but, by then, he couldn’t give consent, and the family was too overwhelmed by the diagnoses to offer consent. But, a few years later, her mother set up a Caplan family Dementia Research Fund at Baycrest.
After witnessing his mother’s cognitive decline, Tony also supported research at Baycrest’s Virtual Brain mapping project.
Thea and Tony feel contributing to research is gratifying and vital.
“There’s a huge need to support research cooperation in order to advance our understanding of Parkinson’s: its prevention, early detection, and effective and personalized treatment.”
Tony and Thea understand that the significant discoveries required to improve the lives of people living with Parkinson’s aren’t possible in any single lab or clinic in the world. This insight is behind their appreciation for the C-OPN vision. Their transformational gift will shape future research and help to accelerate knowledge across the field. We are grateful for it and thank them for their support.