Saturday, September 06, 2008

Walk because you CAN

QUICK SUMMARY: SUPPORT ME in my walk to d'Feet ALS!

Later this month, I'll be walking in my 3rd Walk to d'Feet ALS. My brother Kenny has ALS (Lou Gehrig's disease). It's a fatal disease that few people know much about, and researchers are having a hard time even slowing its progression. Stephen Hawking has a mild form of ALS that has progressed slowly enough for him to live a relatively long life. The disease has put him in a wheelchair and taken away nearly all control of all of his muscles, but it has left his mind sharp. The same thing has happened to my bother, who is shown in a wheelchair here earlier in the disease's progression:
My brother Kenny and family
Now he still is in a wheelchair (or frequently his recliner), but it usually has a computer attached whose mouse is controlled by his eye movements (a camera captures them). He has a joystick to move him around. It's not too much unlike Stephen Hawking.

My brother's form of the disease is not genetic, but there are genetic forms that they use in the laboratory. Scientists don't understand the cause of ALS, and so they have to use the genetic form in the laboratory and hope they can make discoveries that help everyone. So far successes that they've had with mice models in the laboratory don't map well onto humans. There's so much more work that needs to be done.

Senate Republican Tom Coburn of Oklhaoma has put blocks on bills that would support ALS research. He uses them as leverage. Just weeks ago, a Republican filibuster prevented passage of the ALS registry act. You see, there's not even a nationwide registry of who gets ALS. My brother also had a strange case of shingles when he was younger, and maybe that has something to do with him developing ALS later on in life. If doctors could look for correlations among people with ALS, they could figure these things out, but they'd need a nationwide ALS registry for that. For the moment, Republicans are preventing that. (oh, and stem cell research (embryonic and otherwise) benefits ALS research too)

I can't vote against Tom Coburn (I'm registered to vote in Ohio). I can try to get Republicans out of office. More importantly and more quickly, I can participate in this walk. I can donate to the ALS association. I can spread the word. AND SO CAN YOU.

So come and support my walk with a donation or come and walk yourself. I'll appreciate it, and so will Kenny, and so will Stephen Hawking and many others who were surprised to find one day that they have some link to this sad disease.

Above all, walk because you can. As my brother recently said on the MDA telethon when they talked to him, ALS does not discriminate.

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