DANVILLE -- The views of Mount Diablo were spectacular on a perfect spring day during the annual Samantha Corpus Golf Tournament at Blackhawk Country Club.
Raiderettes and Warrior Girls chatted up golfers at the tees, where stations were stocked with sausages, sandwiches, snacks and beverages. Luxury cars parked on the course were the grand prize for any golfer lucky enough to hit a hole-in-one.
For the 205 golfers out on the club's two courses, this tournament was less about competition and more about having a good time and helping out the foundation started by John Corpus.
"Every hole has been stellar," said Brian Orr, director of sales for the Silicon Valley firm Synaptics, before teeing off.
What brought the golfers out May 15 was the tournament's namesake, 13-year-old Samantha Corpus, and the debilitating genetic disorder called Rett syndrome that affects her and one in every 10,000 to 23,000 girls.
Once the golfing was done, an auction was held inside the club during a gala dinner. When it was all over, the event had raised $250,000, raising the fundraising tournament's seven-year total to more than $1.2 million.
All the money goes to the International Rett Syndrome Foundation, which funds research for a cure for the disorder.
Frank Burkatzky, who became friends with John Corpus when they worked together 10 years ago at the high-end kitchenware company
"I see the hardship the family goes through," he said. "Being here and contributing is humbling. You want to support John and Samantha and get the word out," he said.
Samantha Corpus was born healthy. In her first year and a half of life, she said "Mama" and "Dada" and did all the things normal babies do.
But when she was 2, John and his wife, Kathy, started noticing that Samantha wasn't developing normally. In fact, she was beginning to regress.
She stopped talking and eating, and lost the use of her hands. At age 3½, she was diagnosed with Rett syndrome.
"Today at 13, Samantha doesn't talk, she can't feed herself, she doesn't have use of her hands, per se," John Corpus said. "She's able to walk and she's considered high-functioning, but a lot of her abilities are limited."
Samantha attends a special-needs program at Los Cerros Middle School in Danville. When she's not in school, she's at home in Alamo with her mother, who handles the majority of her care -- feeding her, brushing her teeth, changing her diaper, getting her ready for school and clothing her.
"Kathy provides the day-to-day care. That's not something I'm really good at," Corpus said.
Corpus said he thought hard about what he could do to help. As co-founder and CEO of the Pleasanton-based tech startup Milyoni, he knew he was good at business and at organizing people. He had plenty of friends and business contacts and a large, close-knit extended family.
"Based on my business background and the people that I've met along the way, I thought maybe I could do a fundraiser and create awareness and definitely help try to fund a cure for Rett syndrome," he said.
Rett syndrome is caused by mutations of the X chromosome and affects mainly girls. Most boys with the mutation die in the womb.
Babies with Rett are usually born healthy until about six to 18 months when the symptoms begin to appear. They lose communication skills and use of their hands. They often wring their hands, have seizures and have disorganized breathing patterns. They appear locked inside themselves.
Steve Kaminsky, chief science director for the International Rett Syndrome Foundation, said the short-term goal for Rett research is to reverse some of the symptoms. The long-term goal is to find a cure.
Experiments done in 2007 reversed the symptoms in mice and showed promise that a cure could be found.
"Gene therapy could be a cure, but the technology is not there yet," Kaminsky said.
"This is a rare disease, so getting attention and getting financial support is hard," the foundation's executive director Steve Bajardi said. "It really relies on grass-roots networking."
Bajardi said parents like John Corpus who organize fundraisers are critical for continuing research and providing support for families.
"John is doing something special," Kaminsky said. "He's making sure that his friends tell a friend who tell a friend. He is taking a rare disorder and making it well-known. That's where John really is a local hero."
For John Corpus, getting people together to raise money for Rett syndrome comes naturally. He said he hopes one day a cure will be found for Samantha and for all the girls suffering from Rett.
"I would love for her to say 'Daddy' one more time," he said. "I would love that."
Contact Jason Sweeney at 925-847-2123.
Hometown: Alamo
Age: 47
Occupation: Co-founder and CEO of Pleasanton-based tech company Milyoni
Claim to fame: Founded the Samantha Corpus Foundation in 2006 with his wife, Kathy. The foundation's annual golf tournament has raised more than $1.2 million for the International Rett Syndrome Foundation.
Information: Visit www.samanthacorpus.org


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