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Feeling the Love
VisionWalk was new territory for Steve and Carolyn Browne of San Antonio, because it was the first time they had gone public about their daughters, Sarah and Ellen, having combined hearing and vision loss from Usher syndrome. Though they had been ardent supporters of the Foundation since 2001 — Steve is a national trustee — most people in their circles only knew that the girls had hearing impairments. There was no reason for anyone to think that the girls had other challenges. Both have been doing very well in college — Ellen is a junior studying kinesiology at the University of Texas and Sarah is in the master of public accounting program there. Their vision has been stable since 2001 due to the vitamin A palmitate and DHA supplementation prescribed by Dr. Eliot Berson, an FFB-funded physician and researcher at Harvard Medical School. Steve and Carolyn didn’t want their coming out about Sarah’s and Ellen’s Usher syndrome to complicate or disrupt their daughters’ lives. “We hadn’t gone public about their diagnosis, because we wanted to respect their privacy,” says Steve. “They are happy kids and have enough issues dealing with hearing impairment. We didn’t know if they were ready for it. We didn’t know if we were ready for it.” However, it became clear early on in their fundraising for the 2009 San Antonio VisionWalk that their friends and acquaintances were ready for it. “We felt embraced,” says Steve. “It was a very beneficial experience for our family. Sarah and Ellen felt the love and support of many people.” Incredibly, the Browne family raised $85,000 for the walk, making it one of the greatest fundraising achievements in VisionWalk history. They also obtained $10,000 sponsorships for the walk in 2009 and the upcoming walk in 2010 from the Max and Minnie Tomerlin Voelcker Fund. (Steve had previously helped establish a relationship with that private foundation, which led to a $250,000 grant for FFB in 2008.) Steve was especially impressed by the effectiveness of Internet-based fundraising. He says that at first, he was dubious about asking for money through e-mail. “I figured people would just read the messages and discard them. But I quickly learned that the power of the Internet is remarkable. It was like building a fire. It just started spreading. Sometimes, I would send out an e-mail, and 30 minutes later, I would get a $1,000 contribution. That happened many times. People read the e-mail, they were moved, and they reacted.” What was perhaps most inspiring to Steve was how much people wanted to support the cause. “For many people, their first response was ‘thank you for letting us know.’ They were grateful to participate. Most people want to help if they are able to,” he says. Steve and Carolyn are encouraged by the recent momentum in research. They are also pleased with their decision to get cochlear implants for Sarah and Ellen at early ages. The implants have given the girls meaningful hearing, and enabled them to be educationally mainstreamed. And while the Brownes are thankful that their daughters’ vision has remained relatively stable in recent years, they feel a sense of urgency for a treatment that will head off any further vision loss. “A cure can’t come fast enough for us,” says Steve. The Brownes are now gearing up for the 2nd Annual San Antonio VisionWalk, which will take place on March 13, 2010. |
