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Every little bit counts, and little bits add up. Throughout the country last year, Packard Center supporters' grass-roots events yielded a total of $2,031,630 for ALS research. Here's a sampling of those fund-raising feats and the people behind them—all sprinting for the cure. Philanthropy, Kid-Style Lydia Belden and Michelle Relin
One March day last year in Cape Elizabeth, Maine, Lydia Belden—age 11—slipped on her favorite dress and raced to the kitchen to finish setting up snacks. As hostess for her first boy-girl party, she wanted everything just right before the fun began. But this shindig would have a serious charge: raising money for ALS research. Four months earlier, Lydia's family friend, Darcy Wakefield, had died of ALS at 36. Lydia missed Darcy terribly. Hired in 1988 as a family babysitter, the spirited college student bonded with the family. Over the years, they'd shared many milestones. But a day before an outing, Wakefield cancelled, citing pain in her foot. Lydia's father, a neurologist, suspected ALS. He sent Wakefield to Boston, where the diagnosis was confirmed. After her friend died, Lydia decided to host an event in her honor. She and her mother, Anne, set a date to raise money for ALS research.
At the event, Lydia showed her friends Wakefield's photo and described life with ALS. And, after eating, dancing and a raffle, Lydia had raised $75 for Center research. "You need to go on with life," she observes, "but you can still help others with ALS." In that same spirit, Michelle Relin, of Lititz, Pa., sought comfort after her grandmother, Sandra Tate, died of ALS in December 2004. A vibrant woman, Tate lived in Rochester, N.Y., where Michelle and her two siblings happily visited her. They'd spend more time together when Tate became a patient at Johns Hopkins. "When ‘Mema' couldn't talk, she'd write," says Michelle, "but she never complained." Knowing that her Mema would be absent at her bat mitzvah last May hit the seventh-grader hard. "When I found out there was no cure for ALS," she explains, "I made it my bat mitzvah project." A basketball enthusiast, Michelle organized a tournament, with help from her family, friends and basketball league. More than 90 kids competed at the winter event, garnering $4,000 for Center research. And though the bat mitzvah would mark her official coming of age, Michelle had already shown a mature sort of kindness. Photo-Ops DAVID ROBINSON The winter of 2005 became suddenly bittersweet for David Robinson. Life looked good. His family was close. He was fit. At 69, the retired architect would run several miles each day through his Sausalito neighborhood. But a recent family trip to Lake Tahoe had raised concern. Robinson became short of breath while swimming. Then his thumbs went weak. Just before Christmas, he learned he had ALS.
Robinson became a patient at the University of California San Francisco. Meanwhile, his younger son, Steve, had gone online to explore advances in ALS research. He kept coming across Center Director Jeffrey Rothstein's name. Before long, mutual friend and Center board member Chris Angell had arranged a meeting with Rothstein in Baltimore. Even by phone, Steve was struck by Rothstein's combination of high energy and focus. Eager to channel energy and funds into finding a cure, Steve, a hedge fund manager in Manhattan, and his wife, Jenny, as well as friends and family, asked Rothstein how they could help. Together they came up with the "NYC Walk to Beat ALS." Soon a close knot of friends and family stepped up to help. Held in Manhattan last May 19, the event drew more than 150 people, including high school friends from 50 years back. Rothstein and others addressed the crowd about ALS research. "Everyone was riveted," recalls Robinson's wife, Mary. The day ended with a family visit to two museums with 19th century photo exhibits. A passionate collector of photos from that era, Robinson has just published a book on the topic. "It was an emotional, unforgettable day," says Mary. All told, the NYC Walk raised $60,000, three times the amount Steve expected to raise. "There were some big headers," he said, "but lots of people chipped in smaller sums—just as important and meaningful. They really add up." Proceeds were split between the Center, for research, and Robinson's endowment fund at UCSF for patient care. Robinson works out at a facility he helped design there, one with special accommodations for people with neurological problems. Despite what he faces, Robinson considers himself a lucky man. The 21st century photo, on page 15, says it all. The Wind Beneath His Wings WARREN SCHIFFER As a college student, Warren Schiffer would save every spare penny for surfing trips abroad. In the process, he discovered a passion for air travel that later led to a job at United Airlines as a flight attendant. By 1987, Schiffer knew everyone who worked as a United international flight attendant in New York—or so he thought. One day, spotting a pretty young lady doing paperwork, he went over and asked her name. "Toni Diamond— it sounded like a stage name," he recalls. "From that moment, she put a spell on me." But thanks to overlapping schedules and separate home bases—she in Cape Cod, he in Rockaway Beach, N.Y.—a date didn't come for months.
Finally, they met at a sushi bar while on a layover in Japan, then began scheduling dates around flights to the exotic region. Marriage followed in 1990. They set up house, first in Rockaway, later in rural Connecticut. Walking in Japan remained their favorite pastime. But early in 2000, on one such hike, Diamond's foot started to give. Seven months later, she was diagnosed in New York with ALS. Eventually, she came to Johns Hopkins, where Jeffrey Rothstein, director of the then brand-new Packard Center, confirmed the diagnosis. Instead of turning inward, Diamond immediately wanted to raise money for a cure. She knew it might not come in time for her, but she wanted to help others, says Schiffer. Enlisting family help, the couple got right to work. They partnered with the Muscular Dystrophy Association to host an inaugural event in New York that fall. Using a metaphor for the flying that had brought the couple together and Toni's love of angels, the event was called "Wings of Hope," later renamed "MDA's Wings Over Wall Street." And despite the fact that 9/11 had occurred just days before, the evening was wildly successful. To date, Warren and Toni's project has raised more than $6 million for ALS research. Diamond died in November 2004, at age 46. Since then, Schiffer, 50, has continued to champion the cause. "When you experience what I did alongside someone who inspires you every day," he says, "how could you walk away?" Joining the Packard Center board two years ago, Schiffer was immediately struck by the heady blend of science, entrepreneurship and zeal. "I'm a bit overwhelmed," he says, "but as long as I'm able, I'll continue to tell my story and engage people in the fight." |
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