Sunday, May 19, 2013

On the Slow Road to a Non-Profit..

Since this blog was born, it has been my intention to start a non-profit organization and to write a book. Both in an effort to raise awareness.  Now, I've added becoming a pilot to my list of ways to promote social awareness. I have to tell you..all three things seem huge and intimidating, yet I can hardly wrestle my focus long enough to do just one.  I'm chipping away at the pilot and book thing, yet I'm at a complete stand still with the Non-Profit.

Non-Profits sound cool and selfless. They are more work than you would think. Right now, Bob and I are working on choosing people for our Board of Directors. We need at least five people, with the majority not being family.  So we need three people that are not family. Problem is..we live in Texas and have few close friends near us. We have solicitated our closest friends here, a husband and wife team, so we need two more. Where to find them?  Who do we trust with our organization? Who do we trust with our budget and our plans. Even more difficult, what are our budget and plans?

We want to promote knowlege in the medical and private communities. We want to eventually get a book published (even self-published would work), offer speaking appearances and I want to do a National Awareness Flight, and would love to eventually make an International flight.  This involves fundraising, finding an airplane, paying for my flight instruction (Bob is a flight instructor, but we don't own a plane, so we have to rent a plane for every lesson), paying for licenses ...and the list goes on.  I can barely comprehend all  of the ideas in my head.  Imagine, if we had a plane, we could offer ferry services to patients that can't afford to travel to Chiari specialists in other states. We'll call it Zipperflight..(we've talked a great deal as you can tell)! 

But it all starts with a Board of Directors..Are you interested in joining us in this endeavor? Do you have ideas or thoughts about how we can promote Chiari Awareness and Education? If you are hesitant to post here, send an email or message me on our Constricted Cranium page on FB. I'd love to hear from you.

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