KD goes to 10-3-39

I expect that most of you do not know me other than as the sole BC grad
here in this here chatroom. By definition, I am apathetic towards
football, so I do not post that often. I am posting this as a brazen
appeal to help me find a cure and eliminate a little known neuromuscular
disease known as Kennedy's Disease. In 1999 I was informed that I had the
genetic neuromuscular disease known as Spinal Bulbar Muscular Atrophy,
more easily called Kennedy's Disease (KD). This is a progressive disease,
similar to Huntington's Disease and ALS that attacks men (women do not
get it) in their 30's and 40's by destroying their muscles leading to
weakness that usually puts them into a wheelchair. When I was informed of
the diagnosis, I was 45 and had never even heard of this disease. With
the encouragement of my sister who had run several marathons, I decided
that I would not give into the disease and I registered for the 2000
Motorola Marathon here in Austin. Although it took me almost 5 hours, I
finished with the immortal words "Never Again". Well, most of you konw
how that works - I had caught the bug. I sought training and ran the 2001
NYC Marathon in under 4 hours and eventually qualified for the Boston
Marathon - something I never thought I could ever do.

Over the years, the progression of my disease seems to be slower than
that of others with KD and I am still able to run although I think I have
lost some speed. I feel blessed that I can still do this as most men with
KD at my age cannot walk 100 yards. Now, what does this have to do with
you? I am running in the 2007-08 Distance Challenge - a series of 6
races (almost 85 miles) finishing with the Austin ATT Marathon in
February. So far, I have completed the first three (the fourth, a 30 K
is this weekend) and I am i 16th place out of 32 in my age group. I am
hoping to raise money for the Kennedy's Disease Association, a group of
individuals with KD and their families and friends. The KDA is a
nonprofit organization with the primary aim to cure KD. KD is very rare
and has been designated an orphan disease which essentially means the
amount of research dedicated to KD is minimal. The KDA attempts to
overcome this by funding research grants aimed specifically at KD. We
have been quite successful - 70% of our funds go directly into these
grants - the bad news is that we are a small group and need money to do
our work. This is where you come in (I expect you saw this coming!!).
Another runner (triathelete, actually) whose family has KD and I are
going to do the Distance Challenge as a fundraiser - and we are asking
for your help. If you can afford it, please support us by sponsoring us -
any amount would be greatly appreciated. It is easy to do, go to
http://www.firstgiving.com/distancechallenge and follow the instructions.
I cannot thank you enough for your help.

If you would like more information about KD, please go to
http://www.kennedysdisease.org/ or contact me personally - I am happy to
talk about it.

I am sorry for such a crude appeal, but this is very important to me and
it the best way I have of fighting this disease. Thank you for your help
and please think about sponsoring my running (it will be tax deductable!)

Ed