This man is biking across Canada to raise $1M and break barriers for those with multiple sclerosis
Jonathan Allenger begins 6,000-km journey from Vancouver to St. John's on Sunday
When Jonathan Allenger begins his epic cycling journey across Canada this weekend, it won't just be to raise a million dollars to fight multiple sclerosis.
The 39-year-old wants to show Canadians living with MS that they can still dream big.
"I hope that it shows people there's no shame in talking about what they're experiencing. I hope it breaks down that barrier," said Allenger, who was diagnosed with the condition following an onset of symptoms in 2013.
Allenger's ride begins during MS Awareness month, and he hopes the money raised will contribute to curing the condition that affects nearly 100,000 Canadians.
Multiple sclerosis is a disease in which the body's immune system attacks myelin, an insulating layer around nerves. The resulting damage prevents the nervous system from properly transmitting signals.
For Allenger, the range of physical and mental symptoms include fatigue, brain fog and periodic difficulty with executive function, which allows people to plan, organize or problem-solve.
"The uncertainty can be debilitating," said Allenger, adding that it can also cause extreme anxiety and panic attacks.
Progressive forms of the disease can result in paralysis and inability to independently function.
12 people diagnosed each day, says MS Canada
Becky Mitts, vice-president of community for MS Canada, says 12 people a day are diagnosed with the condition in Canada. Women are three times more likely in Canada to have MS than men, she says.
According to Mitts, there are now 19 "disease-modifying therapies" for MS, but no cure. And its causes are still unknown. Nevertheless, MS Canada has funded $200 million in research over its 75-year history with nearly all its current backing coming from private donations or fundraising like Allenger's.
"Our vision at MS Canada is a world free of MS," she said.
Allenger is now hoping to add to that total with a dream he's had for almost a decade.
He says the idea of cycling across Canada came into focus when he suffered a "mental health crisis" after learning from his neurologist in January that his MS had progressed.
Allenger says he's long found comfort in cycling, which he took up in 2014 after his friends joined an MS Bike event to show solidarity following his diagnosis.
"Getting out there, being active makes me feel good. It helps me counter some of these effects of having this disease."
No cure yet, but major recent discoveries made
Mitts tells CBC News that research from Harvard University shows nearly everybody living with MS had the Epstein–Barr Virus (which causes mono) before diagnosis.
"We've just discovered this interesting puzzle piece."
Researchers in Canada such as Dr. Maryam Faiz, a University of Toronto-based neuroscientist and researcher with Medicine by Design, a community of regenerative medicine researchers, are working hard on new technologies that could help treat MS.
Faiz invited CBC Toronto to her lab, where a team works on a cutting-edge gene therapy involving reprogramming the cells that drive the progression of MS into cells that are lost in the disease and needed for proper function.
"We can deliver codes or instructions to cells to tell them to become another type of cell," said Faiz.
She says this includes the type of cell that produces myelin, adding that replacing those cells could potentially improve some of those symptoms.
"I think that would lead to an improvement in the quality of life for MS patients," said Faiz.
The research, which is partly funded through Medicine by Design, is still in early development, but Faiz says it could potentially have wide-ranging applicability for other diseases.
She also hopes it will eventually go to clinical trials.
'We need to invest in this now'
Mitts says the kind of work Faiz and her team are doing could have "massive" benefits. But, she says, more money is needed.
Mitts says she was in Ottawa the same day she spoke to CBC News, asking members of Parliament for $15 million in research funding.
"The time is now. We know we need to invest in this now. We have the information, we have the data," she said .
Meanwhile, she's proud of Allenger and grateful for the work he's doing for MS Canada.
"He is so remarkable," said Mitts.
A team of people will help Allenger along the way, including his step-dad and cousin.
He's also hoping people will engage with him in person or through social media and contribute to the campaign as he makes his way from coast to coast.
"Journey with Jonathan is about having other people join us and participate because we're trying to do this together as a community."