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 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 HoerdtB次元官网网址檚 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 HoerdtB次元官网网址檚 wife in 2001.

HoerdtB次元官网网址檚 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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B次元官网网址淭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 donB次元官网网址檛 have right now,B次元官网网址� 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.

B次元官网网址淭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 B次元官网网址� thatB次元官网网址檚 how meaningful it is,B次元官网网址� he said.

Hoerdt previously cycled from St. JohnB次元官网网址檚 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 TorontoB次元官网网址檚 Peter Munk Cardiac Centre.

B次元官网网址淚tB次元官网网址檚 been such an honour to share AdamB次元官网网址檚 story and meet with someone whoB次元官网网址檚 so open about their story,B次元官网网址� said Courtney Mahrt, senior public affairs associate at the Peter Munk Cardiac Centre and a friend of Hoerdt.

B次元官网网址淗eB次元官网网址檚 one of those people who you canB次元官网网址檛 believe how relentlessly positive he is, given everything heB次元官网网址檚 been through,B次元官网网址� she said.

Besides educating people about ARVC and funding research, HoerdtB次元官网网址檚 ride also aims to forge a collaborative support network for those who struggle alone with the condition and donB次元官网网址檛 know how to act.

B次元官网网址淭he information (about ARVC) is rare, but I think thereB次元官网网址檙e more people connected than we know and so thatB次元官网网址檚 why weB次元官网网址檙e so deeply committed to the work,B次元官网网址� Johnston said.

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

B次元官网网址淲e had no idea it impacted so many people until we started doing this work.B次元官网网址�

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

B次元官网网址淲hen our family was first diagnosed with ARVC in 2018, not a lot was known about it in our community, and we werenB次元官网网址檛 that far from one of the leading research centres for it.B次元官网网址�

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.

B次元官网网址淭he people (with ARVC) that I feel the worst for, that we want to help so much through what weB次元官网网址檙e doing, itB次元官网网址檚 the younger people,B次元官网网址� Johnston said. B次元官网网址淵ou find that out in your 20s or your high teens, thatB次元官网网址檚 devastating. Everything changes.B次元官网网址�

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 HoerdtB次元官网网址檚 caravan, set up camp each day, organize food and help with outreach.

B次元官网网址淎dam typically gets up about 5 oB次元官网网址檆lock in the morning, goes through his routine B次元官网网址� stretching, particular proteins in his meal B次元官网网址� before he gets started,B次元官网网址� Fowler said.

B次元官网网址淢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 oB次元官网网址檆lock or so, get everything set up and just sit back and wait for him to show up.B次元官网网址�

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

B次元官网网址淭hen we just cook dinner and relax.B次元官网网址�

Hoerdt said being on the road for 11 to 12 weeks will be a tough way of life, adding theyB次元官网网址檒l be living B次元官网网址�100 km at a time.B次元官网网址�

B次元官网网址淭he way that weB次元官网网址檙e doing it, I couldnB次元官网网址檛 even come close to doing it without Ian,B次元官网网址� he said. B次元官网网址淗aving one of my best friends along for the ride is fantastic.B次元官网网址�

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

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