Things are heating up for Adam Hoerdt as he prepares to begin the second leg of his bike ride fundraiser for an understudied heart condition that will take him from Beacon Hill Park in Victoria to Waterford, Ontario.
The three-month journey begins at Mile 0 between 8am and 9am on Sunday (May 29) and will continue to raise awareness and funds for arrhythmogenic right ventricular cardiomyopathy (ARVC), which killed Hoerdt’s wife Jackie, incapacitated his son Greg and his other son affects Ben and five others in his family. ARVC is genetically inherited and is more common in athletes and can lead to sudden and unexpected death, as happened in Hoerdt’s wife in 2001.
Hoerdt’s in-law, Michael Johnston, is ARVC positive and said losing his sister Jackie and not initially knowing how she died was the most shocking day of his life. Johnston, whose wife and two children also have ARVC, helps Hoerdt promote the cause both domestically and internationally.
“This is so personal to me because this is about my kids, and this is about their kids, and the ride will take us that much closer to finding answers to questions that we just don’t have right now,” said he was cycling along the Rhine in Frankfurt, Germany, where Hoerdt was riding last month.
Due to his condition, Johnston must take medication to keep his heart rate down and also avoid strenuous physical exercise. He already has two metal hips, but it was a positive ARVC test that put an end to the cardiovascular activity and high-impact sports he enjoyed in his younger life. As he put it, the condition runs deep in his family roots.
During a phone conversation with Black Press Media, Johnston passed a youth hostel operated in a castle on the Rhine where Hoerdt and his wife stayed in 1993.
“Losing your wife and then having your son in a foster home and then having the wherewithal to be able to do whatever it takes to help your family and others — that’s so meaningful,” he said.
Hoerdt previously cycled from St. John’s to Waterloo, Ontario in 2021 before postponing the remainder of his ride across Canada due to COVID-19 restrictions. As of May 27, his GoFundMe page has raised more than $23,500 for potentially life-saving ARVC research. Hoerdt said his family provided $75,000 to sponsor a one-year fellowship for electrophysiologists at the Peter Munk Cardiac Center in Toronto.
“It has been a great honor to share Adam’s story and to meet someone who is so open about his story,” said Courtney Mahrt, senior public affairs associate at the Peter Munk Cardiac Center and a friend of Hoerdt’s.
“He’s one of those people where you can’t believe how relentlessly positive he is given what he’s been through,” she said.
In addition to educating about ARVC and funding research, Hoerdt’s drive also aims to build a collaborative support network for those struggling alone with the condition and not knowing how to act.
“Information (about ARVC) is scarce, but I think more people are connected than we know and that’s why we’re so committed to the work,” Johnston said.
The connection with the European network of ARVC-positive people during his stay in Germany was “quite an eye-opener”. The biggest surprise for Johnston has been how many people have reached out to share their own experiences with ARVC and ask for help.
“We had no idea it affected so many people until we started this work.”
Hoerdt said the lack of available information about ARVC at Canadian research centers is problematic.
“When our family was first diagnosed with ARVC in 2018, not much was known about it in our community and we were not far from one of the leading research centers for it.”
He explained the two scenarios ARVC-positive people face: not knowing they have it and not being aware of the risks involved, or knowing they have it and needing to understand how to limit their activity and still be able to enjoy their life.
“The people[with ARVC]that I feel the worst about, that we want so badly to help through what we’re doing, are the younger people,” Johnston said. “You find that out in your 20s or your late teens, it’s devastating. Everything changes.”
Hoerdt said the biggest challenges on this leg of the ride are the Rocky Mountains, the Coast Mountains and the Kootenays, but it’s hard to compare to the hurricanes, crosswinds and low temperatures he encountered in Newfoundland last summer. On the trip, his long-time companion will be Ian Fowler, who will drive Hoerdt’s caravan, set up camp each day, organize meals and help with public relations.
“Adam usually gets up around 5 a.m., goes through his routine — stretching, certain proteins in his meal — before he starts,” Fowler said.
“My job is to finish packing the trailer and take it to the next construction site, where I arrive a little earlier than he does. I usually arrive around 1pm, set everything up and just sit back and wait for him to show up.”
Fowler said Hoerdt will usually arrive around 2 or 3 p.m. and will take time to relax, rest and write for his blog.
“Then we’ll just cook dinner and relax.”
Hoerdt said being on the road for 11 to 12 weeks will be a tough life, adding that they would live “100km at a time”.
“The way we’re doing it, I couldn’t even come close to doing it without Ian,” he said. “Having one of my best friends with me for the ride is awesome.”
For more information or updates from the trip, follow ARVC Ride Across Canada on Facebook.
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