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.

Tennessee dad had a gut feeling that he could train the shepherd to help his son.

As nearly anyone who has adopted a dog or cat from a shelter can attest, there’s something special about a rescued pet; it’s as if the animal senses he’s been given a second chance at life. That’s certainly the case with Juno, a Belgian Malinois who was rescued from a shelter just days before she was to be euthanized. But since coming to live with her family in Alcoa, Tenn., Juno has taken on the role of rescuer to four-year-old Lucas Hembree. Lucas suffers from Sanfilippo syndrome. Read More

Orlando Families Cause is Top Vote- Getter In Pepsi Grant Challenge

The $250,000 grant will go to an Ohio researcher who has discovered what may be a gene therapy to stop the disease. Team Sanfilippo still has additional funds to raise for the research, which has yet to be approved by the FDA, but the parents are hopeful — and grateful.

Learn more.

May 15, 2012

ABC Philly airs about Climb For Cure

http://abclocal.go.com/wpvi/story?section=news%2Fhealth&id=8642300

 

Brandywine, DE. – Ryan, 6, and Brayden, 3, suffer from a rare genetic condition called Sanfilippo syndrome, which affects the metabolism.

Learn more.

Team Sanfilppo Foundation received nearly 177,000 votes to win the Eastern Region’s top prize in the $1.25 million Vivint Gives Back Facebook Campaign.

Learn more.