Retinitis pigmentosa (RP) is no stranger to Colette Kramer and several generations of her family. The vision-robbing condition can be traced back to her great-grandparents, the Thorners, who emigrated from Russia just before the turn of the 20th century. As a dominant form of RP, the condition has affected approximately 50 percent of her family members.
However, nothing is deterring Samantha or Charlie from making the most of their dreams and abilities. In fact, you would be hard-pressed to find a more accomplished pair of kids. Despite being legally blind and unable to drive, Charlie is captain of his baseball team, and plays virtually every position. He’s also a talented singer and musician who can play the clarinet, guitar, and saxophone. “He’s got a great sense of humor and is a natural leader,” adds his mother. “He plays baseball so well that many people don’t know he has vision loss.” Samantha is headed to UCLA in the fall and, like many high school seniors, planning for her prom. Like Charlie, she is an accomplished musician — she’s played the violin for nine years. Samantha, too, has strong leadership skills, and is drawn to social causes. She’s worked to raise awareness and money for the people of Darfur; she is president of her high school Democratic Club; and she completed an internship with Los Angeles City Councilmember Dennis Zine. “Samantha thrives in the academic world. She hungers for knowledge and personal excellence,” says Colette. “And since I am unable to drive because of my loss of vision, Samantha unselfishly drives her brother to school and other functions, and drives me to the grocery store and on errands.“ Both Samantha and Charlie have also worked hard on behalf of the Foundation. They reached out to their schoolmates and friends to raise money for the Foundation’s 2008 Los Angeles VisionWalk. To kick-off their fundraising drive last year, they went before more than 150 faculty and staff to share their story. To create some friendly competition and maximize fundraising, the class that brought in the most money was honored with a special treat. The Kramer family served as family chairs for the 2007 and 2008 Los Angeles VisionWalks, and they organized teams of more than 50 walkers. Colette and her husband, Michael, first learned about FFB when Charlie and Samantha were small. As the kids grew up, they decided that they wanted the whole family to become more involved. “Being active in FFB is empowering, especially during these incredibly promising times,” Colette says. “So much is happening. We are raising money for research and we are seeing miracles. Young people who couldn’t see are now moving through an obstacle course. That’s absolutely incredible. We know that by working together, we can help ensure that treatments and cures are found not just for our family, but for every family.” |
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