It's Not About the Back

It's Not About the Back
I'm selling the rights to put your name on my bike in exchange for donations to the Leukemia and Lymphoma Society. You have to go to my web page to donate. Visit the blog for details.

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Touching the Floor The cycling season started off with a bang this weekend. Well, actually, if you want to simulate the sound of a bike crash, take a drawer full of silverware and drop it on your patio. Then follow that with your favorite exclamation of pain. Professional riders in the Tour de France refer to crashing as "touching the floor". In pretty much every situation, you do not want to touch the floor. I touched the floor this Saturday. And not some casual slip where you lose control and end up in the bushes crash, a genuine smack-into-the-asphalt-end-up-in-the-emergency-room crash. If I were a car, I'd have probably burst into flames. Thankfully, I did not spontaneously combust on impact. We were near the end of our 55 mile ride. I was traveling along a flat road. I was in the bike lane but I wanted to turn left at the upcoming intersection. I had my right hand on the handlebars and I was looking over my left shoulder at the traffic coming from behind
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  This is my son, Rob.  He's the one on the right.  He is one of the most generous, articulate, intelligent, and funny people I know. I'm not just saying that because he's my son, it's legit :-) You may already know him.  You're lucky. What you may not know is that he has a genetic disorder called Vascular Ehlers-Danlos Syndrome.  I'll provide more details below. Suffice it to say, it's a very shitty disorder.  In short, people with this disorder don't produce enough collagen.  Collagen is what helps tissues like blood vessel walls and internal organs stay together.  Without collagen, your tissues are prone to tear and rupture.  That's bad...really bad. We only learned that Rob had this disorder in the last few years.  I only recently learned in the last month, that there are organizations that are trying to help.  I will get to my point, I learned that there are a family of connective tissue disorders and they're pretty rare.  In fact, we didn&#
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"There, but for the grace of God, go I."

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Hey all,  It's been a few weeks since my last update. I'm even more serious about raising awareness and raising funds to support Vascular Ehlers-Danlos Syndrome (VEDS) research and patient care. Next Wednesday, the Lad and I will be going to Stanford to meet the folks in the Cardiovascular Connective Tissue Disorders program. Rob will be introduced to their program and staff, I'm going to find out how I can help. Just a reminder, if you'd like to help - the link is here -  Team Strength Against VEDs Here's the problem with rare diseases and disorder, there's no money in it so there's not the research engines that exist to put more energy into finding treatments or even cures. Personally, I think the discoveries and advances in CRISPR may offer hope. BTW, one of the leading researchers in this area is Nobel Laureate Jennifer Doudna who is on the faculty at UC Berkeley. Go Bears! My point is that there's not enough awareness and there's not enough rese
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