The effort has to be equal or greater then the reward. When I embarked on my record setting run across Canada last summer I had one vision, to create a nation conversation and a movement for rare disease in Canada. The challenges facing the rare disease community in this country are astounding and for the most part go unnoticed and hidden from plain sight from the average Canadian. The reason why we are the only developed country in the world without a national rare disease strategy is the simple fact that we have not had a national discussion and awareness campaign about rare in Canada, ever! Rare families like mine go through hell everyday, swimming upstream and generally unsupported to advocate for their loved ones, the difference is I was just far more public about it. With Outrun Rare I was given a stage, microphone, and spotlight to shine a light on this vulnerable group of Canadians that go without access, support, and treatment.
When I was not able to medically continue my run in Winnipeg I called out for support to everyone who was supporting my efforts. I asked all of you to continue my run and finish what I couldn’t. I asked if you could donate your miles run or walked and donate. Together, I hoped we could accumulate enough miles to finish the run from Winnepeg to St. Johns to show rare families everywhere that we’ve got their back. You stepped up. Not only did you run enough miles to get to St. John’s but in the end you accumulated over 53,000 kilometers! That’s enough to circumnavigate the entire planet!
As a father of a child with a rare disease I intimately understand the feeling of not being supported, feeling ignored and hopeless. For the very first time I felt supported and that was because of caring, loving people like YOU that gave selflessly to create hope and support for rare families like mine.
Just as I asked in late July I again am calling on all Outrunners again. Click on the Outrunners Program tab and follow the steps to become an official Outrunner ambassador. As an ambassador you will receive swag, partner product and discounts, but most importantly represent Outrun Rare in your community and play a huge part of creating a movement that’s so desperately needed for rare families like mine.
From the bottom of my heart, thank you.