Kapes is going to extreme heights to raise research money for the disease affecting his children. And McIlwain, a personality on the Preston & Steve morning radio show, accepted the challenge to go with him.
Kapes will climb 20,000-foot Mt. Kiliminjaro in August, to raise awareness and money to fight San Filippo syndrome, a rare genetic disease.
His sons Ryan and Braden have the disease, which causes enzymes to build up in the brain.
When his sons were diagnosed, Kapes shifted into activist mode, trying unique avenues to raise research money on Sanfilippo syndrome. He won $500,000 in a Pepsi Challenge, and a $250,000 grant from Vivin. So far, he & other parents raised nearly a million dollars.
And Kapes is continuing the offbeat approach:
"Because the syndrome my children suffer from is so rare, and there's so many good causes out there, it's very difficult for me to get people involved because so few people are affected. So i needed to do something completely different to stand out," he told us today.
There's no cure for the disease, but Kapes has already raised nearly a million dollars to find one.
And Kapes says it is paying off. "We're making progress," he says. "We actually have a clinical trial that is finishing up over in Europe by a major pharmaceutical. But they're going to bring it back to the FDA, to try and get it approved here. We're hopeful of a clinical trial for the boys in December or January."The two plan to blog as they climb the 20-thousand foot mountain, and if they can get a donation of a satellite phone, they will call in to the show.
The climb could take 5 or 6 days to do.
Kapes says he is training for the high altitude by exercising with masks that limit his oxygen, similar to the conditions he will experience on the mountain.
McIlwain says he'll train this summer by hiking in the Colorado Rockies.
Donations can be made by texting "CLIMB" to 72727, or through a website,
