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Suffering for a Cause

Suffering for a Cause
A year or so ago, I wrote a letter to the crew at Suffer Better about why their message resonated with me so greatly.  Two of my three children have a very rare genetic metabolic disorder.  It’s treatable (no cure), but it must be caught early in order to avoid significant damage that can be life altering for a child.  To this end, our family is a test case for the treatment.  Our oldest was not diagnosed until almost 6, and has significant special needs, while our youngest was diagnosed around 1, and is now a typical 3rd grader.   So while we are now stable with our treatment, I decided that, in the spirit of Suffer Better, it was time to channel my suffering into something good.  Here is a bit about my recent fundraiser for The Association for Creatine Deficiencies (, and how amazing it was to have people give for the suffering that I’ve come to enjoy so much.  (for the record…I am still trying to suffer “better”!)
I just finished my second Ironman triathlon.  It’s a lot.  A lot of training.  A lot of swimming.  A lot of bike riding.  A lot of running.  And oh yeah, a lot of being distracted from real life because when you’re not swimming or biking or running, you’re thinking about swimming or biking or running.  Also, it costs a lot of money.  And, last, but not least, it requires a lot of support (and understanding) from your family to allow you to go through the process.  It’s a very selfish act, and sometimes I cannot believe they let me get away with it.  I say thank you A LOT. 
So, when I was thinking about doing this very selfish thing for a second time, I thought about how I could possibly make myself feel better about being so selfish.  It didn’t take a lot of thinking.  The solution seemed pretty simple.  I would raise money for The Association for Creatine Deficiencies. 
I don’t put myself out there that often, and I strongly dislike asking for help.  But I wanted to get real serious about this.  The wife and I put together a Crowdrise donations page where we told the story of our two with GAMT, and what it meant to us to raise money for ACD.  It’s so personal, and I was a little sketchy about being so open.  But this required opening up, and I think it helped me to have something to hold onto during my training as well.  It was now bigger than just me, and I prefer it that way. 
I launched my official campaign on Rare Disease Day, and I called it “Suffering for a Cause.”  My tag line was: “If you give, I’ll suffer for it.”  I shared our story and facts about CCDS with family, friends, and coworkers.  The response overwhelmed me.  Before I had even begun my training plan, I already had contributions starting to add up.  It was so humbling, and motivating, and inspiring.  I couldn’t wait to get going. 
As I progressed through my training, the cause pushed me forward through all the suffering and the selfishness.  I competed in a few ramp-up events, and gave some updates on the website, and each time I did, the renewed support pushed me forward even more.  There was no way I would let anyone down.
When I crossed the finish line this time, it was a very different feeling from the first time.  I felt the same relief of being done, the same blend of fatigue and happiness.  But this time, the sense of accomplishment was so much stronger.  I gave my wife a hug and cried, thinking of how lucky I am to have her support, the support of our family, and friends, and coworkers, and even a few folks I don’t even know, who gave over $8000.  A lot of money, a lot of joy, a lot humbling.  I say thank you A LOT.

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