Great Strides made toward CF cure
By Jesse Phelps
When Dan Knapp succumbed to cystic
fibrosis three years ago, his family discovered a whole new world.
Dan's father, Steve, says he looked into his son's room and,
seeing his computer, had a thought.
"I said, man, he spent so much time on this computer. I
walked over, fired it up, went into his e-mail directory and
picked put two or three names that he seemed to communicate with
the most and I sent them an e-mail to let them know what happened.
And over the next two or three weeks, we received hundreds and
hundreds of e-mails from all over the world."
It turns out that Dan had cultivated a second life as Rear Admiral
Mendak in a Star Wars online universe. "They actually had
a memorial service for him online," says Steve. "And
the day that he passed away, April 13, is Admiral Mendak Day."
The experience gave rise to dansroom.org, a Web site dedicated
to the sharing of Dan's experience with the world and to Great
Strides, an annual walk to benefit cystic fibrosis research.
On Saturday, the fourth annual Great Strides welcomed participants
from all over the state for a barbecue, silent auction and, of
course, the walk itself. The lakeside was decorated with balloons
and signs from companies who sponsored or simply sent walkers.
"It's grown into this," says Steve. "We were in
Libbey Park, it was 104 degrees the day of the walk, we raised
$9,000. The second year we moved to the lake. We raised $27,000.
Last year we raised $46,000 and we started getting more walkers
so they moved us from the far end of the lake down to this end.
This year we're shooting for $60,000."
While the final proceeds from this year's walk have yet to be
tallied, silent auction items were plentiful and all were receiving
generous bids. Donated items ranged in value from a $15 gift
certificate to Antonio's Restaurant to a $1,200 weekend stay
at the Biltmore in Montecito.
Other prizes included several cellular phones from Motorola,
one of two main sponsors, UCSB basketball season tickets, rounds
of Golf at Soule Park and several nice bottles of wine from a
variety of Santa Ynez area vinters.
Walkers came from as far as Bakersfield and Los Angeles but many
were locals. One walker, Sarah Griesbach, said she came to support
the cause because she was lifelong friends with Dan.
"This is my third walk and
we're here to support the Knapps," said Griesbach. "I
grew up with Danny and saw first-hand how he coped with the disease.
He lived a really full life, considering the difficulties he
had to go through. Being here just honors his memory and the
life he lived. It goes toward helping other kids just like him.
It kind of blows your mind just seeing how many families are
affected by it."
The Ojai Valley News
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