TORONTO – His speech is a bit slurred and his body has a mind of its own, but Michael J. Fox’s passion for finding a cure for the disease that has afflicted him and millions of others worldwide is clear and unequivocal.
The Canadian-born actor, diagnosed with Parkinson’s disease in 1991, was in Toronto on Thursday to announce that his foundation supporting research into the degenerative condition is now a fully registered charity in his home country.
“I was really pumped that we can give our supporters in Canada an opportunity in Canada to participate in what we’re doing,” Fox told a packed news conference.
The diminutive, award-winning TV and film actor founded the Michael J. Fox Foundation for Parkinson’s Research in 2000, and the organization has since funded almost $150 million in grants to scientists worldwide – including a number in Canada.
“I’m not an MBA, I’m not a PhD, I’m not an administrator. I just wanted to do something,” said Fox, who publicly disclosed his battle with Parkinson’s in 1998. “And through talking to people I had the idea that a focused approach to research would be helpful.”
“My rule was I only had to be smart enough to find people who were smarter than me and keep them close – and it was distressingly easy,” he said to laughter.
The goal of the foundation is to help bring about new treatments – and ultimately a cure for Parkinson’s – and thereby become unnecessary, he said.
“We’re not building for perpetuity. We’re in business to go out of business.”
Parkinson’s is a progressive neurological condition that causes tremors, rigid muscles and balance problems. Symptoms arise due to the death of brain cells that produce the chemical dopamine – but what causes those cells to die is unknown.
Fox said that while he’s realistic about the scientific slogging that needs to be done to unravel the mysteries of Parkinson’s, “I think we’re on track.”
Still, the addition of the foundation as an official charity in Canada has raised some concerns for an organization dedicated to helping others with the disease.
Parkinson Society Canada, a non-profit, charitable group that provides support and services for about 100,000 Canadians with the condition, is worried Fox’s foundation will divert some donations from its $10-million annual funding needs.
President Joyce Gordon has said she fears that any drop in donations will affect the society’s ability to provide services to people living with the disease.
“It’s difficult to imagine how we would even do that,” countered Fox, noting that the foundation has helped raise awareness of Parkinson’s.
“But we need to be focused. If we did nine things, we could not do any of them well. So we wanted to pick the one thing, which is speeding research.”
“We make no apologies for the fact that we are research-focused,” he said, adding that the foundation doesn’t discourage donors from supporting other Parkinson’s organizations and he is grateful to those who work as advocates for patients.
“The only competition is whatever’s causing these cells to die. That’s our competition, and that’s who we want to beat.”
Foundation CEO Katie Hood said Fox’s organization currently has 250 research grants under management, and has funded more than $4 million of scientific investigation in Canada.
“We are country-and institution-agnostic when we make funding decisions,” she said. “All we care about is funding the best people, the best projects and the best plans.”
“We leave no stone unturned in our search for improved treatments.”
Dr. Anthony Lang, one of two top Canadian researchers who also joined Fox at the event, said Parkinson’s is a complicated disease that likely is not a single disorder but the culmination of many.
So research into the condition needs to be broadly based, said Lang, head of the Movement Disorders Centre at Toronto Western Hospital, which works with the foundation.
“We’re looking at trying to crack this nut in many different ways.”
Dr. Gordon Keller, director of the McEwen Centre for Regenerative Medicine, said stem cells in the lab could help researchers better understand the progression of the disease and provide a vehicle for drug testing.
“When applied to Parkinson’s disease, we could imagine studying the development of the brain cells that are affected by the disease and really begin to investigate why, how and when these cells die,” Keller said.
Asked if he believes research will lead to a therapy that could help him personally, Fox showed the optimism he is known for.
“I certainly get up every day believing there will be a cure in my lifetime,” he said.
“I don’t live my life based on the worst-case scenario. If you look at the worst-case scenario and you ponder it too much and it never happens, you’ve already lived it. And if it does happen, you’ll do it twice.”
“So I just go along and hope for the best.”