VILLANOVA, Pa. – There is not a mountain in the world that a parent would not climb for their children. For Villanova University alumnus Carl Kapes ’97 COE, that mountain was Mt. Kilimanjaro, and his mission was to raise awareness and money for children suffering from a rare and fatal genetic disorder called Sanfilippo Syndrome, or MPS III – including his own two children (Ryan and Brayden). Kapes, who resides in Wilmington, Del., joined together with the parents of other children with this disorder to form a non-profit medical research foundation called the Team Sanfilippo Foundation. The mission of the Foundation is to find potential therapies that can be tested clinically, as well as to advance research, education and awareness, improve the quality of life for children affected by the disorder, and, ultimately, find a cure.
On Monday, Jan. 20, Villanova will partner with Kapes and the Team Sanfilippo Foundation for “Sanfilippo Syndrome Awareness Night.” When the Men’s Basketball team hosts Creighton University at the Wells Fargo Center in Philadelphia at 7 p.m., a number of planned activities will help raise awareness for Sanfilippo Syndrome. All students in the Wells Fargo Center student sections will receive free Villanova Basketball-Sanfilippo Syndrome Awareness t-shirts. Other fans interested in purchasing shirts can do online through Jan. 16 at noon. Information about Sanfilippo Syndrome and the mission of the Foundation will be distributed at the entrances of the arena. A video about the Kapes family, the Team Sanfilippo Foundation, and their mission to fight the disorder will be shown at halftime of the game. For ticket information visit www.villanova.com
“Villanovans are known for their commitment to making a difference and creating positive change in the lives of others,” said the Rev. Peter M. Donohue, OSA, PhD, Villanova University President. “Carl’s determination to help his children and take a leadership role in this battle against Sanfilippo Syndrome is a great example of that commitment. By teaming up on Jan. 20, Villanova aims to help raise the public’s awareness of Sanfilippo Syndrome, and the Foundation’s mission to find a cure.”
Kapes and his family recently visited the University as special guests of the men’s basketball team prior to Villanova’s game versus Providence on Jan. 5. In addition to touring the basketball facilities, head men’s basketball coach Jay Wright coined Kapes’ two sons, Ryan and Brayden, “team captains” for the day, and the two attended the Wildcats’ pregame walk-through and team meal.
“We were honored to have Carl and his family join us before our game against Providence,” stated head men’s basketball coach Jay Wright. “Carl is doing amazing work with the Team Sanfilippo Foundation, raising awareness of this fatal disease. We hope the entire Nova Nation can join us at the Wells Fargo Center on Jan. 20 as we support Team Sanfilippo.”
In late 2008, Kapes’ children were diagnosed with Sanfilippo Syndrome, a genetic error of metabolism. Children with the disorder are missing or are deficient in the enzyme used to break down the body’s Mucopolysaccharides molecules – sugar molecules used in building connective tissues. Instead, the body stores these molecules in the cells, causing progressive damage. There is currently no treatment or cure for Sanfilippo, and the life expectancy is 10-20 years.
“Time is of the essence as more children are losing their lives to Sanfilippo Syndrome,” said Kapes, who serves on the Board of Directors as Treasurer of the Team Sanfilippo Foundation. “As my boy's health decreases, I have become a father on a mission in desperate need for help to save my children's lives.”
Kapes and his family have been promoting awareness and funding since 2008 in hopes of saving their children. Over the last five years, they have been responsible for raising over $1 million through local fundraisers toward a therapy that will help their children. Kapes also contributed to the creation of the Team Sanfilippo Foundation in 2009. The Foundation is an entirely parent-run volunteer organization, with the ultimate goal of saving their children's lives.
“With little or no help from the biopharm industry due to the rareness of this disease, the Team Sanfilippo Foundation has managed to fund a therapy that has reached the Natural History Study phase, with a clinical trial date set for late 2014,” Kapes said. “This therapy would save my children's, and other children's lives. The Team Sanfilippo Foundation is just one of the foundations that need to come together to raise over $2 million by June 2014 to keep this therapy on track.”
Kapes graduated from Villanova University in 1997 with a Bachelor of Science degree in Electrical Engineering. A former Villanova student-athlete, he was a member of the Wildcat varsity baseball team from 1994-95.
For more information on the Team Sanfilippo Foundation, including opportunities to support its work, please visit www.teamsanfilippo.org
About Villanova University: Since 1842, Villanova University’s Augustinian Catholic intellectual tradition has been the cornerstone of an academic community in which students learn to think critically, act compassionately and succeed while serving others. There are more than 10,000 undergraduate, graduate and law students in the University's five colleges – the College of Liberal Arts and Sciences, the Villanova School of Business, the College of Engineering, the College of Nursing and the Villanova University School of Law. As students grow intellectually, Villanova prepares them to become ethical leaders who create positive change everywhere life takes them.