Run to Live

Meet Shane James.

April 15, 2013 - Genzyme Marathon - 078

I wanted to share some more amazing-ness about the Boston Marathon Running for Rare Disease team and there patient partners we got to meet last month. During our time in Boston there is not one person we met that was not aw-inspiring. Amongst many, I had the pleasure of meeting a man named Shane James, an Australian inspiration who literal runs to live and loves to run. I was once again inspired by both him and the fact that he was brought into my life, and I wanted to share his story of strength with all of you. Prepare to be inspired.

In 2007 at the age of 44 Shane learned that he has Stiff-Person Syndrome, a nightmarish neurological disorder that affects only one person in a million. Neither its cause nor its cure is known, but it’s a disorder that affects the body’s autoimmune system, sending the wrong signal down the spinal cord, creating muscle spasms. SPS sends electrical shocks throughout the body, affecting internal organs and muscles, causing spasms so severe that they can actually break bones and rupture muscles, making it impossible at times to even walk. With news of the magnitude Shane new he wanted to tackle this disease head on. Unfortunately the medicine only works on about 50% of the patients and Shane was not one of them. Running out of hope and time Shane felt the need for speed. Against doctor recommendations and his body’s fight against him, one day he felt the felt the urg to run. When Alexa and I asked why, he said it was his “intuition” … and that he later read “intuition is based on passed memory” Chew on that one for a while, I know I did :)

What Shane slowly discovered was that the movement enabled him to transfer the pain from his spine into his abdomen and down through his legs. It also release endorphins and dopamine down the spinal cord, and that acts as a natural opiate. Even though the pain was still excruciating, he suddenly felt like he had a chance. Running was about to save his life. Now Shane runs!! Runs all sorts of marathons, mega marthons and even tacked his first three hundred mile run this year. He still as SPS, but it does not define him and his tremmors and spasms are much more managable. A miracle of sorts, but one that requires a lot of determination, training, strength and perseverence.

Shane was introduced to Phil in 2011. Phil accompanied Shane during his first Boston as his guide, only to realized by the end of the race … Phil would be the one to learn the greater lessons from Shane that day. Now they are forever friends, and ran side by side in this years marathon, both doused in Warrior paint, and WN stickers … both inspired by someone much smaller than them, with great lessons of his own … our Wylder.

shane and phil this year
shane and phil this year

You can read about Phil and Shane’s first marathon together here:

As I came home and digested the many folks I met over that weekend and was reminded that unity is hope.  As I obsorbed how it must feel for him to run for himself, he is is own patient partener in a since I felt inspired.  I contemplated WHY I felt such a connection to Shane … but I think figured it out. It is because he reminds me of my Wylder.

  • He doesn’t let his disease define him.
  • He makes a difference
  • He inspires.
  • He tacked life struggles head on.
  • He listens to his intuitions.
  • He follows his dreams.
  • He is humble and happy.
  • He possesses no such thing as a “why me” attitude.
  • He never gives up.
  • He gives others hope.
  • He is loved.
  • He is a Warrior

You can follow Shane and see were his legs are taking him next on facebook at!/shane.james.3760?fref=ts

Remember to look up and meet the people brought into your lives so you can be inspired to be the best version of yourselves. Enjoy your weekend Wylder Nation … and I don’t know, maybe even go for a run (tee hee). Alone we are rare, together we are strong! Wylder, thank you for showing me Shane in a lite I may not have apprecaited in the past. All things are possible because of you. Lots of love. xoxo


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