Support for San Fillipo syndrome sufferers

August 9, 2011 12:45:06 PM PDT
A family in Delaware is using the power of social media to spark research into a rare disease that's slowly killing their sons. And they want the help of Facebook users everywhere.Both Ryan and Braden Kapes suffer from a disease called San Fillipo syndrome. It's a genetic disease that causes an enzyme to build up in a child's brain. Kids develop normally for several years, then slide backwards. Carl Kapes tells us the diagnosis was devastating, but he wasn't down for long.

Carl Kapes: "You kind of hit that low spot. Then you have to pull yourself up and say - this is what we're.......your kids get you going."

There's no treatment or cure for San Fillippo syndrome. In fact, it's so rare, most drug companies aren't interested in it.

Earlier this year, Kapes and other San Fillippo families won a $250,000 Pepsi Challenge grant. Now they are taking aim at another quarter-million dollars offered by the Vivint company.

Carl Kapes: "We're bent on finding a cure for this. Even if we can't save our children, if we can save another family from going through this, then it makes our crusade worth it."

To find out more about the campaign and connect with Team San Filippo, click here.

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