A light in the darkness: Curt and Shonda Schilling share a dream about a world without debilitating disease. Their tireless work to fight ALS and skin cancer makes Curt No. 1 on TSN's annual list of Good Guys in pro sports

Sporting News, The, July 5, 2004 by Paul Attner

On a sultry late spring night in Washington, D.C., Shonda Schilling stands on the steps of the Jefferson Memorial.

In 72 hours, her husband will win his fifth game of this season, to the delight of thousands of ALS patients nationwide. But on this evening, she stares through the light of hundreds of candies, looking toward the White House far in the distance, and she cries.

She cries for the ALS families gathered before her. They are assembled for a candlelight vigil that marks the start of an annual effort by ALS advocates to lobby Congress for desperately needed additional research funding. Earlier, she began the program with a brief welcome, then listened to songs and speeches whose poignant words still linger in the heavy air. She recognizes some of the patients sitting before her in wheelchairs, and she recognizes family members who have lost loved ones in the year since the last advocacy period. When she rises to say goodbye, she struggles to find the appropriate message.

Neither Shonda nor Curt Schilling has ALS. No one in their immediate family has been subjected to the awful pain and slow agony created by its unknown origin, unrelenting intrusion and certain death sentence. Yet they long ago were touched by the needs of ALS patients, the hopelessness of the disease, the anger it produces, realizing there still is no cure, not even a life-prolonging drug, although 65 years have passed since Lou Gehrig and ALS were so intimately linked.

This is baseball's disease, and its most visible supporters are the Schillings, who have spent the majority of Curt's time in the majors, a tenure now in its 17th year, pushing the needs and hopes surrounding ALS in front of a public much more aware--and much more supportive--of higher-profile disorders. Through Curt's Pitch, where fans pledge money for every Schilling win and strikeout, their own donations and other fund-raising events, the couple has generated well over $4.5 million to fight ALS. But even this impressive achievement doesn't accurately reflect the depth of their commitment to battle what formally is known as amyotrophic lateral sclerosis, which destroys the nerves that control muscles, leading to total paralysis.

On this night, with Thomas Jefferson standing in the background, that commitment touches Shonda Schilling, staring at the solemn faces before her. "I see the faces of ALS," she says, her voice breaking. "I know I am speaking for my husband. I feel so privileged that you guys have let us be part of you. I think the biggest reason that we are still in baseball is because of you. Because you teach us what the true meaning of life is and remind us of what is important daily. It is our dream, too. A life without ALS." Two days later, she is on Capitol Hill, lobbying legislators for more ALS funding.

This is an orphan disease. It is so cruel, the way it grabs victims and quickly eliminates their mobility, their ability to talk and, eventually, their ability to breathe. Death is fast, usually within three to five years; care is 24 hours and costly. Unlike cancer or heart disease, with millions of survivor-advocates generating publicity and funds, ALS is such a vicious killer that living victims number only 30,000 or so at a time, putting it on the back burner of the nation's charitable consciousness.

That's why the long-term coupling with the Schillings is so important to those seeking a cure to ALS. It is this dedication that is reflected in Curt Schilling being named the 2004 No. 1 Good Guy in pro sports by the SPORTING NEWS. "Having his name associated with the disease means an incredible amount to us," says Ellyn Phillips, president of the Greater Philadelphia ALS Association chapter and a member of the national ALS Association board. "You can't put a price tag on it. People want to be associated with a winner. The two of them, Shonda and Curt, are stronger than ever for ALS; it is just a beautiful, great story."

They are a fascinating couple, the Schillings. He is ultra-serious in public, brainy, driven, outspoken, complex, individualistic, sometimes impatient, edgy, not always organized, often distracted, at 6-5 usually sticking out above the crowd. She is the emotional, outwardly compassionate part, a mother of four children under the age of 10, the scheduler, the enabler, warm, soft, approachable, smart, genuine, slim, independent. They both are strong in will and determination; their relationship can be fiery and funny.

Their ALS story begins in Philadelphia after a 1992 trade with Houston. Curt is just another guy, still trying to establish major league roots. The Phillies' premier charity is ALS, and players have to attend an educational session about the disease. Phillips leads the discussion; she brings a guest, Dick Bergeron, a recently diagnosed ALS patient. Curt is about to marry Shonda; they had talked about community work, but they wanted to do more than write checks. "We wanted to make sure we made a difference given the opportunity baseball afforded us," he says. Bergeron speaks eloquently; he mentions his symptoms first emerged while playing golf. His speech affects Curt, a golfer. Curt tells Shonda, "We've found what we should do" That fall, they present to Phillips their idea, Curt's Pitch for ALS. Curt will pledge money to ALS for every strikeout ($100) and win ($1,000), guaranteeing at least $25,000 a year. The local ALS chapter will ask sponsors and fans to either pledge funds or contribute lump sums in his name. In 1993, the Phillies advance to the World Series, he is a star and Curt's Pitch explodes.