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It takes heart …

I’m DAVE PROCTOR

In the summer of 2018 I attempted to run across Canada in record time meanwhile raise much needed funds and awareness for the Rare Disease Foundation. Being forced to stop just east of Winnipeg due to medical reason only deepens my desire to invoke change and get back on my feet to advocate further. Rare Disease reform and support requires immediate action and as long as I’m the face of Outrun Rare change is coming. Stay tuned, we are nowhere close to being done.

I am known as an elite runner and I like to think an all-around nice guy. My drive to break the current Guinness World Record to run across Canada stems from my deeply seeded passion to push boundaries and making impossible feats possible. Supporting the Rare Disease Foundation is a natural fit. My aim is to draw awareness to the needs and struggles that rare disease forces upon those it touches, and to raise funds to assist those focused on the important research that must continue.

My son Sam struggles daily with a rare disease called RECA, which makes simple movements difficult. Simply put, if he could run like his father he would never stop.

Our fundraising goal is $1 million which I know is a big task but equals the effort. We need your support –  volunteer, donate, or spread the word. We’re calling out to every Canadian, Runner, Ultra Runner, Athlete…  Believe me, I know the importance of every step – no matter how small.

To have a heart …

MEET MY SAM

In the winter of 2009, our lives turned in a direction that none of us would have expected. Our son Sam was developing normally as an infant, but at 18 months old and again at 2 years old, Sam suffered from a neurological episode that caused paralytic hypotonia for several days. It took 6 years to receive a diagnosis for Sam, a very rare genetic disease called Relapsing Encephalopathy with Cerebellar Ataxia (RECA.)
 

This diagnosis was made possible through the dedication of countless doctors, scientists, researchers and fundraisers in the rare disease community.

Since our diagnosis, peace and calm have flooded our lives, still understanding thatat this present time, there is no cure for Sam’s disease, and yet very aware an occurrence could affect Sam at any time in his lifetime. 
 
Sam’s disease is so rare, that he is one of less than twenty reported RECA cases in the world. Ataxia is the symptom that Sam now lives with, which affects his motor skills, compromising his balance and co-ordination. 
 
Despite the everyday challenges Sam faces, he is full of smiles, especially when beating his dad at video games.
 

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