ALAMEDA -- Not many kids can say they spent their summer vacation traversing the halls of the nation's capital, bending the ears of powerful Washington, D.C., lawmakers who may one day be able to make changes to the law that benefit their loved ones.
Alameda teenager Bethany Kharrazi can. Kharrazi, 13, spent part of her summer vacation this year making a pilgrimage to Washington, D.C., to advocate on behalf of her brother Jeremy Kharrazi, 23, who is fighting cystic fibrosis. She was one of about 60 teen family members to make the trip for Teen Advocacy Day sponsored by the Cystic Fibrosis Foundation.
Cystic fibrosis is a genetic disease that primarily attacks the body's lungs but can affect other organs. Life expectancy past 40 is rare. Jeremy, a sporty guy who teaches in San Jose for Teach for America, takes two treatments a day with a vest and multiple pills to control his disorder.
They are hoping that a new drug treatment called Kalydeco will help him and others live longer and healthier. The problem? Kalydeco can cost $25,000 a month and insurance companies are resisting claims by cystic fibrosis patients to pay.
Bethany's one-day job on Capitol Hill in June was to educate these politicians about cystic fibrosis and gather support so Congress will increase funding for the National Institutes of Health (NIH) and the Food and Drug Administration and recognize the importance of affordable access to care.
"I get a lot of my traits from my brother being a role model," Bethany said. "He strives for life and puts his best foot forward."
She went in honor of her brother Jeremy because he can't advocate with other cystic fibrosis patients himself -- they can't be near one another for fear of spreading illness. This trip was her second one in two years and she plans on making more stops to Washington.
"She really want to continue to make sure that we have a voice in our family for the cause, for cystic fibrosis, and that people are still interested in funding the organization and funding the NIH and supporting the drugs research for this disease," Bethany's mom, Lisa Kharrazi, said.
Bethany, the youngest of five children, is an exceptional teen. She learned Spanish over the summer through an online course, skipped eighth grade to enter into ninth grade early this year and graduated to a novice rowing crew for Oakland Strokes. She is passionate about Hebrew school and, like many teens, loves Maroon 5. But advocating for her family brings her a special glow.
The Washington, D.C., trip "felt really important," she said, and the major slam dunk of the day was getting U.S. Rep. Barbara Lee, D-Berkeley, to join the Cystic Fibrosis Caucus that day. Lee's 13th Congressional district includes Alameda. Also, the trip was simply fun.
"It's cool because you get to meet a lot of new people," Bethany said. "They all kind of know what you have to deal with at home."