Ever hear of Friedreich's Ataxia?
I hadn't until I met Kyle Bryant. He used to work for my company in our Sacrameto offfice. I don't know him well enough to call him a friend, but I've met him a few times and I've watched his disease progress, and he's the kind of inspirational guy who makes you ask your family, friends, and blog readers to make a donation. Kyle is now a spokesperson for the Friedreich's Ataxia Research Alliance, and organizer of the series of charity rides like the one I'm doing in Davis on June 1.
F.A. is an insidious genetic disorder that slowly but relentlessly takes away your coordination, your ability to speak, your sight, and your hearing... and THEN you get diabetes, scoliosis, and heart disease.
Now I could post some lugubrious videos here showing kids who are losing their ability to walk, teenagers who went from running hurdles to hobbling on crutches, and adults who have to worry that their hearts and lungs will just stop because of this disease... but instead, I found this one of Kyle that shows the guy I know - a man with absolutely zero self-pity:
My Donation Page: LINK (I put one of those tear-jerker videos there in case you need a little arm-twisting). When you click on the donation link, you'll see this:
Now I hate how they make it look like a $500 donation is realistic, and a $50 donation isn't REALLY REALLY generous, but the webmaster didn't consult me. My idea of a magnanimous gesture is to skip one lunch at your regular lunch place and donate the amount you would've spent to a cause that someone cares about enough to ask you to. So don't be shy about clicking the OTHER AMOUNT circle.
One really interesting thing about F.A. is that they know EXACTLY what causes it... the exact genetic error and exactly which genes are involved and exactly where they're located on the genetic map. But they don't know how to "patch" the genetic mistake, or counter-act the effects. So this disease that only affects one in 50,000 people gets a lot of interest from medical researchers because there's a real chance that they could figure it out, and when they do they could apply that knowledge to other similar conditions (like ALS) that affect larger numbers of people. You can share in a little of that triumphant discovery by offering your lunch money to the cause.