Things are kicking into gear for Adam Hoerdt as he prepares to set off on the second leg of his bike ride fundraiser for an under-researched heart condition that will take him from Victoria’s Beacon Hill Park to Waterford, Ont.

The three-month journey starts Sunday (May 29) between 8 and 9 a.m. at Mile 0 and will continue raising awareness and funds for arrhythmogenic right ventricular cardiomyopathy (ARVC), which killed Hoerdt’s wife Jackie, incapacitated his son Greg and affects his other son Ben and five others in his family. ARVC is genetically inherited and more common in athletes and can cause sudden and unexpected death, as was the case for Hoerdt’s wife in 2001.

Hoerdt’s bother-in-law, Michael Johnston, is ARVC-positive and said losing his sister Jackie and not initially knowing how she died made for the most shocking day of his life. Johnston, whose wife and two kids also have ARVC, helps Hoerdt promote the cause both locally and abroad.

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“This is so personal for me because this is about my kids, and this is about their kids, and the ride is just going to get us that much closer to finding some answers to questions that we just don’t have right now,” he said while cycling along the Rhine River in Frankfurt, Germany, where Hoerdt rode last month.

Because of his condition, Johnston must take medication to keep his heart rate down and also refrain from strenuous physical exercise. He already has two metal hips, but it was testing positive for ARVC 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.

While speaking on the phone with Black Press Media, Johnston passed by a youth hostel operated in a castle on the Rhine that Hoerdt and his wife stayed at in 1993.

“To lose your wife, and then to have your son in a long-term care home, and then still have the wherewithal to be able to do everything you have to help both your family and others – that’s how meaningful it is,” he said.

Hoerdt previously cycled from St. John’s to Waterloo, Ont., in 2021 before postponing the remainder of his cross-Canada ride 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 has committed $75,000 to sponsor a one-year electrophysiologist fellowship at Toronto’s Peter Munk Cardiac Centre.

“It’s been such an honour to share Adam’s story and meet with someone who’s so open about their story,” said Courtney Mahrt, senior public affairs associate at the Peter Munk Cardiac Centre and a friend of Hoerdt.

“He’s one of those people who you can’t believe how relentlessly positive he is, given everything he’s been through,” she said.

Besides educating people about ARVC and funding research, Hoerdt’s ride also aims to forge a collaborative support network for those who struggle alone with the condition and don’t know how to act.

“The information (about ARVC) is rare, but I think there’re more people connected than we know and so that’s why we’re so deeply committed to the work,” Johnston said.

Connecting with the European network of ARVC-positive people while in Germany he said has been “quite an eyeopener.” 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 impacted so many people until we started doing this work.”

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Hoerdt said the lack of information available about ARVC in Canadian research centres is problematic.

“When our family was first diagnosed with ARVC in 2018, not a lot was known about it in our community, and we weren’t that far from one of the leading research centres for it.”

He explained the two scenarios ARVC-positive people face: not knowing they have it and being unaware of the associated risks, or knowing they have it and having to understand how to limit their activity while still enjoying their lives.

“The people (with ARVC) that I feel the worst for, that we want to help so much through what we’re doing, it’s the younger people,” Johnston said. “You find that out in your 20s or your high teens, that’s devastating. Everything changes.”

Hoerdt said major challenges this leg of the ride include the Rockies, coastal mountains and Kootenays, but are hard to compare to the hurricanes, crosswinds and low temperatures he encountered last summer in Newfoundland. Along for the journey will be long-time companion Ian Fowler, who will drive Hoerdt’s caravan, set up camp each day, organize food and help with outreach.

“Adam typically gets up about 5 o’clock in the morning, goes through his routine – stretching, particular proteins in his meal – before he gets started,” Fowler said.

“My job is to get the trailer all packed up and out and over to the next site, where I get there a little earlier than him. I usually pull in about 1 o’clock or so, get everything set 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 takes time to decompress, rest and write for his blog.

“Then we just cook dinner and relax.”

Hoerdt said being on the road for 11 to 12 weeks will be a tough way of life, adding they’ll be living “100 km at a time.”

“The way that we’re doing it, I couldn’t even come close to doing it without Ian,” he said. “Having one of my best friends along for the ride is fantastic.”

For more information, or for updates from the journey, follow ARVC Ride Across Canada on Facebook.

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