He's one of the greatest pitchers in baseball and most recently a World Series champion with the 2004 Boston Red Sox. Yet, it was golf that led Curt Schilling and his wife Shonda to a lifelong mission.
Back in 1992, when Curt was with the Philadelphia Phillies, he and Shonda were invited to a fundraiser for amyotrophic lateral sclerosis (ALS). Always generous with their time and service to the community, the Schillings were happy to go – not realizing that this particular cause would become a lifelong commitment.
They were seated with a man named Dick Bergeron, who had been recently diagnosed with the disorder. “He told us that he first noticed the symptoms of the disease while he was golfing, and he found that he couldn't grip his clubs,” recalls Curt. “I had just started playing golf myself, and it really struck a chord with me, imagining what that might feel like.”
“Sitting across from Dick, eating dinner with him, and realizing that he couldn't feed himself and thinking about all the other things he couldn't do – that really brought home how drastically your life can change,” agrees Shonda. “At the same time, we both realized that there was little awareness of ALS, and we wanted to change that.”
Athletes and celebrities like the Schillings often find themselves with a host of worthy causes competing for their time and attention. Most people might just have written a check to the ALS Association and moved on, but Curt and Shonda Schilling aren't most people. Dick Bergeron had touched their hearts and inspired them to take up a cause.
Over the past 13 years, the couple has raised more than $5 million to help fight ALS, the disorder also known as Lou Gehrig's disease, after the New York Yankees Hall of Famer who died in 1941. Working with the Philadelphia chapter of the ALS Association, they created the “Curt's Pitch for ALS” program, in which supporters pledge to donate money to the ALS fight for every batter Schilling retires. (And he strikes out a lot of batters!) When Curt moved from the Phillies to the Arizona Diamondbacks, and when he joined the Red Sox last year and helped deliver that long-awaited Series championship, the Schillings brought “Curt's Pitch” and an array of other ALS fundraising programs with them.
Figure. Shonda Schil...Image Tools
But the couple's involvement with ALS work goes far beyond dollars. Starting with Dick Bergeron – who has since passed away – Curt and Shonda have made it a point to spend as much time as they can with people who have ALS.
“We meet so many people, but there's something about every person we meet that stays in our minds. We go to different events in at least three states every year. It's almost 15 years since we first got involved and the list of people we've lost is so tremendous,” says Shonda. “The time right after getting diagnosed with ALS is such a dark cloud; if we can do anything to help make that cloud smaller – give people a reason to hope – then we want to do that. That's what's important to Curt and me. We're working hard for a cure, but we have to take care of people in the meantime.”
Bob Luti, a retired computer software salesman from Ipswich who was diagnosed with ALS about two years ago, says the Schillings have revolutionized ALS awareness in Massachusetts. “So many people come to me now and say, 'Gee, we never heard much about ALS before, and now it's everywhere.' You just see Curt Schilling and the Red Sox and they're constantly reminding everyone about ALS,” says Luti, who with his wife Betsy Daly was seated with Shonda's parents at a recent ALS fundraiser.
“The Boston fans have just gone berserk for the program,” says Curt. “And then when we won the Series, that got us extra exposure that we might not otherwise have gotten, and the local chapter here really took that exposure and ran with it.”
Even during the World Series, pitching with an injured right ankle and facing the pressure of the Sox' drive to win their first championship title in 86 years, Schilling had ALS on his mind. Before walking out to the mound during Game 2, he wrote “K ALS” (the “K” is the box score symbol for a strikeout) on the back of his right shoe, right where the national television cameras would focus on the bloodstain seeping into his sock.
“That made me feel so good inside,” says Shonda. Diagnosed herself in 2001 with malignant melanoma (a serious, potentially life-threatening form of skin cancer), she knows what it's like to feel isolated by a terrifying disease. “When people read that “K ALS” on Curt's shoe, I hope they felt like someone was fighting for them. I hope they thought, ‘He's thinking of me.’”
In April, Shonda completed her first Boston Marathon - an event she ran in to help raise money and awareness both for ALS and for the SHADE Foundation, which she founded in 2002 to fight skin cancer. “I was running to take my life back, but I was also running because ALS showed me that you never know what tomorrow's going to bring,” she says. “I ran with ALS' on my sleeve, but as I said to some of my friends, it wasn't just on my sleeve but in my heart.”
Eradicating ALS should be part of baseball's legacy, the Schillings believe - after all, the disease took the life not only of Lou Gehrig, but that of another of the sport's all-time greats. “The greatest baseball player who ever lived, Catfish Hunter, also died of it, and Red Sox pitcher Mike Timlin's mom died of it. I'd really like ALS work to be a part of baseball in all cities,” Shonda says. She's working toward that goal with other players' wives, whom she often brings to ALS events. “Afterward, they always come up to me asking questions. 'How was she before? When did this happen?' They're shocked at what ALS does; they're going to remember it and be affected.”
That's Shonda's goal with every ALS event. Coming up next: her first Boston “Say It With Flowers” luncheon, a fundraiser that yielded more than $250,000 during the three years she held it in Arizona. “Boston fans are so into supporting their athletes, I don't see how it can't be a success,” she says.
Both Curt and Shonda see a reason to hope.
“I'm very excited about the incredible progress that's been made in research – not just for ALS, but with diseases like multiple sclerosis and muscular dystrophy also,” says Curt. “I know that there's a light at the end of the tunnel. It may be a very long tunnel, and we may need a lot more money to get to the end of it, but we're going to get there.”NN
What is ALS?
Amyotrophic lateral sclerosis (ALS) is a progressive disease that destroys motor neurons, which are nerve cells that send messages to the muscles involved in movement. These messages travel from the brain to the spinal cord and from the spinal cord to the muscles throughout the body, like messages that travel along telephone lines. In ALS, these motor neurons are gradually destroyed, which means that the messages can't get through, causing paralysis to spread throughout the body.
FOR MORE INFORMATION
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Amyotrophic Lateral Sclerosis: An AAN Press Quality of Life Guide (American Academy of Neurology Press) A comprehensive book that is part of the AAN book series for patients. Available from the AAN bookstore (www.aan.com, select Academy Store) and from amazon.com, barnesandnoble.com and most major bookstore chains.
National Institute of Neurological Disorders and Stroke
TTY: (301) 468-5981
The ALS Association (ALSA)
ALS Therapy Development Foundation
Les Turner ALS Foundation
(888) ALS-1107 (257-1107)