Shortly after he revealed to the public that he had Parkinson's disease, Michael J. Fox went to online chat rooms where he could read about the experiences of others dealing with the neurodegenerative condition.
He came across the story of a woman who described how awful she'd felt every time she went to her local drugstore because she was convinced the store employee thought she was drunk – a misconception many Parkinson's patients face, as the condition can cause slow movement, tremors and impaired balance. But when the woman went to the drugstore after Mr. Fox's public disclosure, the employee asked her if she had Parkinson's disease, like the famous actor from Family Ties and Back to the Future .
Her account deeply moved Mr. Fox at a time when he was struggling and had “shut down in a way,” he told reporters in Toronto yesterday at an event to mark the formal launch of his foundation as a registered charity in Canada.
Reading her story was a watershed moment for Mr. Fox that helped turn him from a successful actor coming to terms with a degenerative brain condition to a man committed to finding a cure and pouring his energy into helping others with Parkinson's disease.
“Certainly it motivated me, and I think now there is an understanding that … we want to find cures, we want to solve these problems, but in the meantime as we live our lives with them, we are no less than we were before we dealt with them,” he said. “Anything that I may contribute to people having an easier time dealing with this, I'm really grateful to have the privilege.”
However, his foundation's entry into Canada has sparked controversy in this country's Parkinson's community.
Earlier this week, Joyce Gordon, the president and CEO of the Parkinson Society of Canada, said she was concerned that the Fox foundation might undercut donations to her group and divert much-needed funds from education and support campaigns for people with Parkinson's.
Mr. Fox responded yesterday, saying that any work his organization does is in tandem with – not competing against – other Parkinson's organizations. Although he has repeatedly stated that his organization's mission is to find a cure for the disease, he said there is a clear and very necessary role for those who educate the public and provide support to those who need it.
“The concept is crazy to me,” Mr. Fox said, referring to Ms. Gordon's comments. “We're grateful for anybody who's involved in any facet of the journey that Parkinson's patients are on.”
Ms. Gordon said yesterday that her organization appreciates the work done by Mr. Fox and the attention he has generated for the disease. Yet, she still has concerns about what his foundation's presence in Canada will mean for her organization's funding.
“We don't know what impact this will have, but we like to think increased awareness will benefit understanding of Parkinson's,” she said.
Mr. Fox used the stop in Toronto to highlight innovative research being done in Canada, particularly at the McEwen Centre for Regenerative Medicine and Toronto Western Hospital. He was to appear at a fundraising dinner last night with musician Bryan Adams in hopes of raising $500,000 for the two institutions.
Anthony Lang, director of the Movement Disorders Centre at Toronto Western, touted Canada's status as a world leader in Parkinson's research and said it will likely take collaborative efforts, such as those fostered by Mr. Fox's foundation, to discover causes of the disease and potential cures.
Stem-cell research has long been considered a bright hope in the quest to find a cure. Dr. Lang said Parkinson's is extremely complicated, and scientists are far from using stem cells in a practical setting to treat or prevent the disease. While stem cells still offer hope for the future, he and McEwen Centre director Gordon Keller said, it's important to focus on other avenues, including the role of genetics in the development of Parkinson's, and surgery such as deep brain stimulation, in which an implanted medical device sends electrical signals to the brain, to ease symptoms.
“We're looking to crack this nut in many different ways,” Dr. Lang said. Although Mr. Fox is humble about the suggestion his work has had a positive impact on the lives of many, he acknowledged that his foundation's work and his dedication to the cause have helped bring it into the mainstream and made fundraising easier. He hopes that momentum for the cause will continue to build as the Michael J. Fox Foundation for Parkinson's Research enters Canada, a development he said makes him proud.
“At the risk of stating the obvious, it's tremendously meaningful to me that our foundation is now an officially registered charity in my home country,” he said, joking that his mother, who flew from Vancouver to Toronto for the occasion, was spending her time at the Hockey Hall of Fame.
“We're just really pumped that we can give our supporters in Canada an opportunity to participate in what we're doing. We're going to get there.”
