PHILADELPHIA, PA.; May 15, 2012 (WPVI) —    Carl Kapes and Nick McIlwain of WMMR 93.3FM  didn’t even know each other till recently. But they are about to share a once-in-a-lifetime experience.

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.

See full artilce at http://abclocal.go.com/wpvi/story?section=news/health&id=8642300

Published July 19, 2012 at 09:03 AM

Three years ago, Carl Kapes’ two young children were diagnosed with Sanfilippo Syndrome—a rare genetic disease that causes progressive damage throughout the body.

The disease affects one in 240,000 births and those diagnosed with the syndrome usually only live to be 10 to 15 years old. There is currently no treatment or cure.

The news was as devastating as it gets, but Kapes managed to stay positive. “You’re down in the corner,” Kapes says. “You have a choice—you can cry about it or pick yourself up. Even if we can’t save our children, we can help others down the road.”

Read more ….http://www.delawaretoday.com/Delaware-Today/August-2012/Carl-Kapes-Climbs-Mount-Kilimanjaro-for-Team-Sanfilippo-Foundation/#.UAtdgfw-zaU.facebook

April 1, 2012 -Parents, Caregivers and Friends Unite to Raise Funds for Sanfilippo Syndrome by becoming healthy.

 Starting April 1, 2012 we are doing (2)- 8 week missions. “Mission Slimpossible”. Many of the parents of MPS children have realized that their own weight and health are becoming an issue as we eat more, and not always the best choices mainly because of the lifestyles we lead with always caring for our children and not ourselves. Many times we find ourselves eating out of comfort during the difficult times our children have. So a mom suggested we change our lifestyle and eating habits and become healthier so we can care for our children more efficiently and be here for them and not ill ourselves. As a result some are donating a dollar per pound of weight loss they achieve to Team Sanfilippo, others are donating $50 for each pants size they go down during the 8 weeks. We at Team Sanfilippo Challenge you to get a group together at work, church, your social groups, your family members or even online with Facebook friends as some of us have done. Won’t you join us in getting your own health in better shape as well, while donating to a good cause to help find a cure for our kids as your motivation? We challenge you  to join us!! Summer is just around the bend and being in shape means more endurance and enjoyment of the nice outdoor activities when the weather is good! Overall a happier you!!

“When one approach is not working to reach the desired goal, that’s not a reason to abandon the goal. Instead, it is time to devise another approach.”——Ralph Marston

We can reverse years of damage to our bodies by deciding to raise our standards for ourselves, then living differently. Old wounds heal, injuries repair, and the whole system improves with just a few changes in what we put into our bodies and how we move them.