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鈥檚 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鈥檚 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鈥檚 wife in 2001.

Hoerdt鈥檚 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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鈥淭his 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鈥檛 have right now,鈥� 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.

鈥淭o 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 鈥� that鈥檚 how meaningful it is,鈥� he said.

Hoerdt previously cycled from St. John鈥檚 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鈥檚 Peter Munk Cardiac Centre.

鈥淚t鈥檚 been such an honour to share Adam鈥檚 story and meet with someone who鈥檚 so open about their story,鈥� said Courtney Mahrt, senior public affairs associate at the Peter Munk Cardiac Centre and a friend of Hoerdt.

鈥淗e鈥檚 one of those people who you can鈥檛 believe how relentlessly positive he is, given everything he鈥檚 been through,鈥� she said.

Besides educating people about ARVC and funding research, Hoerdt鈥檚 ride also aims to forge a collaborative support network for those who struggle alone with the condition and don鈥檛 know how to act.

鈥淭he information (about ARVC) is rare, but I think there鈥檙e more people connected than we know and so that鈥檚 why we鈥檙e so deeply committed to the work,鈥� Johnston said.

Connecting with the European network of ARVC-positive people while in Germany he said has been 鈥渜uite an eyeopener.鈥� The biggest surprise for Johnston has been how many people have reached out to share their own experiences with ARVC and ask for help.

鈥淲e had no idea it impacted so many people until we started doing this work.鈥�

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

鈥淲hen our family was first diagnosed with ARVC in 2018, not a lot was known about it in our community, and we weren鈥檛 that far from one of the leading research centres for it.鈥�

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.

鈥淭he people (with ARVC) that I feel the worst for, that we want to help so much through what we鈥檙e doing, it鈥檚 the younger people,鈥� Johnston said. 鈥淵ou find that out in your 20s or your high teens, that鈥檚 devastating. Everything changes.鈥�

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鈥檚 caravan, set up camp each day, organize food and help with outreach.

鈥淎dam typically gets up about 5 o鈥檆lock in the morning, goes through his routine 鈥� stretching, particular proteins in his meal 鈥� before he gets started,鈥� Fowler said.

鈥淢y 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鈥檆lock or so, get everything set up and just sit back and wait for him to show up.鈥�

Fowler said Hoerdt will usually arrive around 2 or 3 p.m. and takes time to decompress, rest and write for his blog.

鈥淭hen we just cook dinner and relax.鈥�

Hoerdt said being on the road for 11 to 12 weeks will be a tough way of life, adding they鈥檒l be living 鈥�100 km at a time.鈥�

鈥淭he way that we鈥檙e doing it, I couldn鈥檛 even come close to doing it without Ian,鈥� he said. 鈥淗aving one of my best friends along for the ride is fantastic.鈥�

For more information, or for updates from the journey, follow on Facebook.

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