Announcing the XCanada4Rare

The cat is out of the bag. On June 22, 2018, at sunrise, I will embark from Victoria, BC on foot and not stop until I dip my foot in the Atlantic Ocean off the harbour in St. Johns, NL. We are calling this XCanada4Rare. The length of this run totals 7200 km with 56,000 meters of elevation and I plan to do this in 66 days. That’s 108.1 km per day with no days off. I intend to break the existing TransCanada speed record that stands at 72 days 10 hours held by ultra-running legend Al Howie set back in 1991.

My training started last Wednesday by running the 170 km’s down to Lethbridge then running the Lost Soul 100 miler the next day. My plan was to run home from the race but three days of littering my lungs with the worst smoke I’ve ever seen, I decided to skip the two legged commute home and let my lungs recover. The training will look very different than anything I have done before with the punishment of pounding pavement day after day, month after month. Later this year I’ll race the 6 days run at Across The Years in Glendale, AZ and attempt to break the Canadian record of 540 miles. All of this in preparation for the looming task of hammering hard for 7200 km next summer. My schedule couldn’t be better laid leading into the Trans Canada run, now all I need to do is execute. The physical training will be one thing but the mental training will be another monster altogether. Running 1000 km over the Rocky Mountains from Victoria into Calgary is daunting, but knowing you are only 1/7th the way through with insurmountable obstacles appearing daily with no option but to succeed is damn right terrifying.

I’ve mapped out a conservative estimate on just how much my body/mind can handle day after day and plotted out 66 stops along the way averaging 108.1 km/day. Some days will be longer than others as daily elevation will play a major role such as the run up Rogers Pass, BC, will be a significantly shorter day than the run into Moose Jaw, Saskatchewan. Some other days will be shorter to accommodate speaking engagements and special events along the way (I’ll get into that later). I will wake up before the sun rises every day in a Fraserway RV with Sharon and the kids and my goal will be to get rolling before sunrise. From that point on my crew team made up of friends Wayne and Trish Gaudet will drive along either behind me or meet up along the highway to look after me as I trudge across the Trans Canada. Wayne and Trish’s demeanour, sense of humour, and knowledge spells perfection for a weary, grumpy wayward traveller like me. Sharon and the monkeys will get up on their own accord and wave as they pass me as they slowly and intimately get to know their country stopping at all the sights. Could you imagine getting to do this when you were a child? I’m getting so excited for them! At the end of each day, I will roll up to our RV and have dinner with my family. After eating half my body weight in food I’ll hit the hay only to wake early the next morning to repeat that another 65 times.

There are two reasons why I am doing such an enormous feat. The one is my love for my country and the fact that travelling across this vast beautiful country on my own two feet is a dream come true. The second reason and by far more important is the opportunity that lays before me to create awareness and raise greatly needed funds for the Rare Disease Foundation.

Over six years ago our lives were turned up side down. Our son Sam, then 2 years old was hospitalized for the second time in 12 months with symptoms the medical community did not understand. Before this, I always thought the medical community understood the vast majority of pathologies but since then have discovered they know very little. It took us 6 long years to receive a diagnosis that Sam has a very rare genetic disease called RECA. This diagnosis was made possible via the dedication of countless scientists, researchers and fundraisers in the rare disease community. Since our diagnosis peace and calm have flooded our lives, still understanding that at this present time there is no cure for Sam’s disease but knowing brings a link to best practices, future treatments, the quiet of stopping searching, and involvement in a greater community with people that understand our journey.

The Rare Disease Foundation’s mandate is to raise funds to micro grant studies benefiting the greater understanding of rare disease. Their research philosophy is as follows (taken from the RDF website):

The successful model of micro finance was applied to the problem of: How do we improve a situation where there are 7000 known rare diseases and much more undescribed diseases? The Rare Disease Foundation micro grant program provides a small amount of funding ($3500) that must accomplish a specific research goal and directly improve patient care.

Our applicants, who are usually on the front lines of rare disease care, choose problems that reflect their patients’ priorities. They choose research problems that are solvable for today’s patients and often address problems that are common to a number of different diseases. The small amount we provide fosters collaboration which leverages our funding and our low red tape approach enables productive collaborations to be formed with the best researchers anywhere in the world.

One of the major problems we see with disease research today is the siloization of research activity. Each group of scientists has a very deep understanding of their area but surprisingly there is no easy way to move a project from one silo of expertise to another. A few disease specific organizations now take on the role of research champion, one who moves an investigation from one expert to the next in rapid fashion, but the bulk of rare diseases lack their champion. Rare Disease Foundation research programs are designed to find and fund research champions.

Providing therapy for a disease requires a set of activities that start with the patient (define the disease, its subtypes, its complications, the way it evolves), goes through a group of laboratory studies (find the cause, understand it, model it), then into drug development and ends up back at the patient with a trial of therapy. Since no therapy is ever perfect, this is a circle that repeats to promote better therapies over time. We call this cycle “Translational Care”. The cycle involves translating clinical findings to the laboratory and vice versa with the objective of better care.

This cycle does not turn very well on its own so we identify research champions to crank the wheel of discovery, build bridges between silos of scientific expertise and deliver safe therapies back to patients as rapidly and efficiently as possible. The process can be sped up further if the pathway identified in step 4 already has approved therapies (or their side effects) that target it. In this case, a trial of therapy can be considered without traversing the entire circle.

The cycle takes an average of 44 years from first idea to drug trials in our system but our champions have turned the cycle in 4 to 9 years for 5 diseases and if the wave 4 shortcut is in play, treatment has been delivered 18 months to 3 years after the first patient visit for 9 diseases. We believe the Translational Care cycle is the best model for developing therapies for rare diseases and more quickly improving rare disease care for today’s patients.

To summarize, donations made to the Rare Disease Foundation address the age old issue of how are your dollars benefiting care and affecting change within the rare disease community simply makes sense. Please visit the Rare Disease Foundation website to find more information.

Our fundraising goal is $1 million which I know is a big task but equals the effort. Please visit our website to see how to help achieve our goals by donating, volunteering, and spreading the word. Believe me, we will need plenty of help with all sorts of things.

Wish me luck!

3 thoughts on “Announcing the XCanada4Rare

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s