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The Packard Center could never survive without people who pour their energy into building support. Here we recognize several who made ALS research a personal mission. Volunteer Extraordinaire BEN YUHAS
Ben Yuhas hails from Syracuse, N.Y., a place where long winters breed camaraderie. And though he's lived in Baltimore since 1995, Yuhas is glad some of his family stayed in Syracuse. His older brother, John, diagnosed with ALS in 1997, is reaping the benefits of rural life and lifelong friendships. "It's amazing," says Yuhas. "Everyone there pitches in." As for Yuhas, however, he quickly realized that he could help his brother best from afar. First, he's in a better position to learn as much as possible about the disease. Having earned a master's degree and Ph.D. in electrical engineering and computer science from Johns Hopkins, Yuhas knew to ask his professorial friends with neuroscience backgrounds where the most promising ALS research was taking place. "Right here," they said. "You ought to contact Jeffrey Rothstein." Rothstein, who heads the Packard Center, not only answered Yuhas' questions; he also invited him to monthly scientific meetings. "What I took away," says Yuhas, "is that it's incredibly hard to be so disciplined and patient, working on a small body of knowledge about a mystifying disease." He was also struck by Rothstein's ability to respect hard science while opening his mind to less traditional approaches, like gene-screening. And, being closer to Washington, D.C., Yuhas could help the cause. Drawing from his strengths as a self-employed computer marketing specialist, he uses microtargeting—a sophisticated way to refine the voter base—to help campaigns elect pro-stem cell candidates. From the beginning, Yuhas has supported the Center—"our greatest hope," he says—with regular contributions. He's also helped the Center evaluate fund-raising software vendors and choose the most user-friendly program. The Center's inaugural Fiesta 5K and Fun Run put that software to the test. On the day of the event, though, Yuhas wasn't sitting behind a computer. He was running the race with a neighborhood team he and his wife, Jana, had assembled, as their sons, ages 2 and 9, jogged the Fun Run. The wildly successful event (see page 5) raised more than $100,000; Yuhas' team won an award for raising the most money—$4,500. When Duty Calls JIM KOTMAIR The day after he learned that his close friend had been killed in Vietnam, Jim Kotmair felt compelled to enlist. He finished college first and, beginning as a Green Beret, took a life path that has mixed a desire to make things better with a strong can-do attitude. Kotmair's two-year stint in Vietnam was followed by careers in nonprofits and the defense contracts industry. He spent the last three decades designing aviation controls to ensure safety.
For the past few years, however, Kotmair's way of operating has been tested. One morning in 2003, he noticed his right arm was twitching. Several months later, at Johns Hopkins, he was diagnosed with ALS. As symptoms worsened, he learned balancing strategies at Hopkins' ALS clinic. Soon Kotmair befriended clinic director Lora Clawson and Center Director Jeffrey Rothstein. And—in true Kotmair form—he felt driven to do something. Drawing from his musical family—his son's an opera singer and his wife plays piano—he envisioned a musical fund raiser. With support from the Baker-King Fund, Kotmair spent months planning the program. The event—"To Reach the Unreachable Star"—took place last fall and featured singers, piano selections and guest speaker Jonathan Eig, author of Luckiest Man: The Life and Times of Lou Gehrig. The gala drew 900 people and raised more than $20,000 for Center research. But that, noted Kotmair, was just a beginning. Sadly, Kotmair died last February at age 62, but his son, Jamie, is planning a series of concerts in his dad's memory. "From the moment my father was diagnosed with ALS," he says, "we never heard him complain about his fate. It was always about how he could raise awareness about the disease and find a cure. We owe it to him to continue that legacy." |
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