Katrina Bache has big plans for herself. She wants to go to Georgetown University when it is time for college in five years. She plans to study law, something she said she just recently learned about and believes she will be good at. It is not hard to believe she will be successful at whatever she plans for herself because she has already starred in a public service announcement and spoken before the U.S. Congress.
Bache, who lives in Rockville, Md., has osteogenesis imperfecta, a genetic disorder that causes extremely fragile bones, but said that will not slow her down.
"People need to understand that just because we’re small, that doesn’t mean our brains are, too," she said. "We’re intellectually capable just like everyone else."
At 13, Bache is also busy inspiring those around her.
For the second year in a row the Birdies and Bogies for Better Bones golf tournament is being held at Belmont Country Club, the brain child of Karen Orejuela, a Belmont resident.
"My husband works with Roger [Katrina’s father]," Orejuela said. "Since we have access to the country club, I thought it would be perfect."
BEING HELD MONDAY, Aug. 13, the tournament will benefit The Osteogenesis Imperfecta Foundation and Orejuela hopes to surpass last year’s success where 68 golfers helped raise $15,000.
"All of the money went to the foundation, which is important," Orejuela said. "The cost of a wheelchair can be $10,000. So any help the families can get is good."
Approximately 20,000 to 50,000 people in the United States have OI, as osteogenesis imperfecta is known, which equals approximately one birth each day, Heller An Shapiro, executive director of the foundation, said.
"People with OI have bones that are like chalk," she said. "A cough or a sneeze can break a rib. You can roll over in bed and break a leg."
The disorder, which was first identified in 1879, is caused by a defect in the collagen gene, which gives bones their strength and resistance.
"It’s the difference between a fresh tree branch and a dried twig," Shapiro said.
While the disorder is genetic, it can occur in three different ways, Shapiro said, through a dominant gene, where the parents have a milder case, recessive genes where both parents are carriers but do not show symptoms themselves and through spontaneous mutation.
"In the milder cases you often won’t notice anything other than multiple breaks throughout a life," she said. "There is no specific group [of people] that is more affected than another."
SHAPIRO SAID one of the biggest challenges with OI is raising awareness, since the disorder is not as publicized as others, which is one of the reasons charity events are so important.
"It is such a rare disease and so people need to know about OI," Bache said. "If you went to a group of 100 people, probably not even one person, unless they’re a medical professional, would know what OI is. That’s why it’s important to get it out there."
Forty percent of the money for the Osteogenesis Imperfecta Foundation comes from charity events and private fund raising.
"Without these events we would not be able to function and provide the services we do," Shapiro said.
While the money from the Belmont tournament has not been earmarked for anything specific, Shapiro said it will go toward the foundation’s three goals: funding research, supporting the families of OI patients and creating awareness.
Shapiro said the foundation works on providing money for fellowships, grants and scientific meetings, all geared toward advancing the understanding and research around OI.
"We also answer individual inquiries from families," Shapiro said. "We get about 7,000 a year. And we publish materials to help families understand the disorder."
IT IS BECAUSE of the functions that the foundation does that Orejuela wanted to get involved.
"We had done other fund raisers with the Baches," she said. "And it is a great foundation."
Sponsored by Booz Allen Hamilton, the tournament is expecting around 80 golfers this years, with room for more.
"We can take golfers through the 8th of August," Orejuela said. "We would love to have more than one foursome on each hole."
A foursome costs $750, a hole sponsorship is $250 and a supporting sponsorship is $1,000 and includes a foursome.
"My hope is that we can continue to build the tournament and keep it going," Orejuela said.
"I am just so grateful for events like this," Bache said. "They are so important in helping to get the word out there."