We just finished our first Board Meeting of the year for the foundation. It was a bit overdue. We had so much to discuss that we sometimes strayed off topic and didn't really cover everything we should. We all agreed a second meeting in the next few weeks is due. Sitting here with some music playing, it occurred that one thing was clear: this is a passionate group of people.
In my work life, I insisted on two things above all else: passion and commitment. Those two traits trump knowledge, money or even talent. Passion and commitment are the crucible in which big dreams come to life.
I speak of big dreams because there are those who say (and more often it's unspoken, but no less palpable) that our vision to build a world class ALS/MS Residence is impossible. I call that "small thinking".
Big thinking was never discussed in the house where I grew up. It went unsaid that, if you want to do something, just do it (I think Nike stole that from my Dad). The parallel topic that was discussed was the value of hard work to achieve your goal. "Nothing worth having comes easy." was a phrase I heard more than once. Dad would have loved the New England Patriots them of "Do Your Job" this year. I can honestly say I was never discouraged from doing anything. My parents weren't afraid to let me fail. My folks struck the perfect balance between being supportive and letting us learn the lessons of failure.
Families with ALS know this as soon as they hear the diagnosis fall from their physician's mouth. Fear isn't an option, and neither is small thinking. That's not to say the fear isn't real, you you either give in to it or you saddle up for the fight of your life - literally.
Two comrades in arms were in the hospital recently, fighting through tough different battles against our common enemy. Steve Gleason and Pete Frates, without question two of the highest visibility and most effective advocates in the ALS community today, have both demonstrated passion and commitment from the day of their diagnosis. Some might say it's because they were both high performance athletes but we know people fighting ALS who have never stepped foot on a field of play.
What binds the ALS community together is passion and commitment. There's a perspective and a focus shift that happens when a family hears "Dad has ALS, and we have no cure". At that moment, whether they realize it or not, they've become part of a larger family. At that moment, they become fearful, or fearless. At that moment, their world changes - forever.
It's no coincidence that the vast majority of fund raising for A!S is done by family and friends of the afflicted. And in the case of Pete Frates, Steve Gleason, Augie Nieto and countless others, the afflicted themselves. They share a passion that no families should be forced to endure this disease.
At our Board Meeting, we discussed the need for passion and commitment on our team. There are many smart, experienced people we could ask to be on the Board. But it only works if they have a real connection to ALS or MS or otherwise stared death in the face. If they've experienced that perspective shift.
So...we're always on the hunt for passionate people. Our Advisory Panel,has been very helpful as have some unofficial advisors we know through the amazing ALS Facebook community. They all share the passion and commitment to help us achieve our goal.
Fear? Not an option for us. Small thinking? No thank you. We dream big around here. We live in a world where miracles happen and dreams come true.
Want to help us too? Drop us a line at: info@hope-JG.org.
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