Cycling Duo Cross Canada to Raise Awareness for Huntington Disease

Huntington Disease

As a nurse, I am unfortunately, very aware of the devastating effects of Huntington disease.  Early in my career I had a patient with Huntington disease and to say Huntington disease is a heartbreakingly catastrophic disease, would be a gross understatement.

If you are unfamiliar with Huntington Disease, you are most likely not alone. Although, not as rare as once suspected, it is still a relatively rare disease.

A little background on Huntington Disease (HD) ~ 

HD is a debilitating brain disorder that is fatal and incurable. HD causes cells in specific parts of the brain to die. As the disease progresses, a person with Huntington’s become less able to manage movements, recall events, make decisions and control emotions. The disease leads to incapacitation and, eventually, death.

HD is also a disease of families. A child born to a parent with HD has a 50% chance of sharing the same fate and all family members have the burden of watching their loved ones slowly die. One in every 7,000 Canadians has Huntington disease, but one in every 1,000 Canadians is touched by HD, whether they have the disease themselves, look after someone who does, or have a friend or relative with HD.

Males and females have the same risk of inheriting the disease and HD occurs in all races. Primarily, HD affects adults. Symptoms usually appear between the ages of 30 and 50, but the disease can first appear in children as young as five, or in adults in their 70s. HD remains incurable, and there are currently no effective treatments; but there is substantive hope.

Huntington Disease

About the Cycling Duo’s Cross Canada Trek to Raise Awareness for Huntington Disease ~ 

For the duo, the idea to ride cross-country really started when Marty Denonville’s sister-in-law found out that her three children had HD. Marty knew he had to do something – something big! He teamed up with long-time friend, Jim Stewart, and the two decided to cycle across Canada this summer to raise awareness and funds in support of families who are affected by Huntington disease.

For Jim, having his bike signed by an individual with HD has been his most memorable moment so far. For Marty, that memorable moment occurred when meeting and talking with a couple affected by HD at a tourist site in British Columbia.

So far, Marty and Jim have traveled almost 5000 km, with a total riding time of almost 260 hours – they show no signs of slowing down! And for both, the best part of their journey so far has to be the people they’ve met along the way.

Two guys, four wheels, and one cause – to date, they have raised $25,000 but more than that, they’re ensuring that all Canadians know about HD and its ferocious impact. Many liken the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The dynamic duo’s bike ride will wind through Canada with a goal to finish in St. John’s, Newfoundland on July 31, 2016.

For more information on Huntington disease and the Cycling Duo’s Cross Canada Trek to Raise Awareness for Huntington Disease you may wish to follow along on Facebook ~ Twitter ~ YouTube The Huntington Society of Canada Website and TwoFourOne.

 

The Huntington Society of Canada (HSC) is a respected leader in the worldwide effort to end Huntington disease. HSC is the only Canadian health charity dedicated to providing help and hope for families dealing with Huntington disease across Canada.

Comments

  1. I’m reading “Inside the O’Briens” by Lisa Genova. I am just learning the devastating effect this disease has on a family. God Bless the two cyclers to taking up this cause!

    • Inside the O’Briens is such a vivid depiction of this horrific disease. I agree, hopefully these two cyclers will bring more attention to Huntington disease.

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