Lee is the former president of Eastern Standard Corp., Baltimore, MD, which was a full-line Hunter Douglas fabricator that he helped become a $22 million a year business. For 13 years Lee commuted between his home in Barrington, IL, and his office in Baltimore. Then, in October 1999, his life changed. He doesn't use the word retire. He resigned his position and realigned his priorities. "I had spent an awful lot of time work-wise away from home and finally came to the realization that there's more to living than working," he says.
Things began to change for Lee when he read "Tuedays with Morrie," by Mitch Albom. The book spoke to Lee about giving back to one's community and made him aware of ALS, the disease that took the life of the book's subject, Morrie Schwartz. Then, as things sometimes happen in life, Lee's neighbor was diagnosed with ALS within months of retiring and moving to what was planned to be his dream life in California.
"It personalized the disease for me, making me reflect and say, 'Wow, I could be that individual—or any of us could be,'" Lee says. "The average age of an ALS patient is 55 years old, when people start thinking about slowing down and enjoying life. Then, all of a sudden, they are hit with a terminal illness."
More than 5,000 American men and women are diagnosed with ALS each year; that's nearly 14 new cases every day. At any time, approximately 30,000 people are living with ALS in the United States. There is no known cause, prevention or cure.
ALS can be a brutal disease. It attacks nerve cells in the brain and spinal cord causing the brain to lose control of muscle movement. The usual lifespan of patients diagnosed with ALS is two to five years. For much of that time they are immobile and unable to speak, which is why ALS is not a highly visible disease. But Lee has dedicated almost 10 months of his life to trying to change that. That's the time he has spent with A Ride With a Reason.
Always interested in health and fitness, Lee once was a regular participant in Chicago's annual triathlons. It was while he was riding his bike training for one of these grueling events that Lee hit upon an idea. "I was thinking how lucky I am to be able to do this, and there's someone I know who will never ride a bike again and will be in a wheelchair and further confined," Lee says. He came up with A Ride With a Reason: a cross-country bicycle trip that would raise money and—just as important—awareness for ALS.
The idea was a natural. It tied together Lee's new goals and interests: a call to give something back to the community, stay healthy, see the country, meet people and get involved.
Lee planned to raise $32,000 during A Ride With a Reason. The math was simple. He would get 1,000 people to sponsor his 3,200-mile ride at a penny a mile. All of the money would be donated to ALS research and the National Hospice Foundation. As it turned out, Lee overestimated the number of sponsors he would get, but underestimated their generosity. Lee has raised $80,000 to date.
Lee's ride took 73 days and crossed through eight southern states. The journey began in San Diego on the California coast and topped out at 8,200 feet above the desert floor in New Mexico. It took him through the Yuha Desert and the below-sea-level Imperial Valley. In Arizona, with its sparsely populated ranch country, every town was a welcomed site and an opportunity to fill up water bottles. The route followed the Rio Grande River, through the Davis Mountains and into the central Texas hill country. Mississippi offered rural riding all the way into Alabama. From there, the scenery varied greatly across the Florida Panhandle, from the historic coastal city of Pensacola to the alligator-filled waters around Palatka. The ride ended with Lee dipping a bike tire into the Atlantic Ocean off the beaches of St. Augustine.
Along the way, Lee met many people, including other groups of cyclists making the cross-country trek, and talked with reporters. He was interviewed by CBS and NBC network affiliated television crews.
Because his was a solo ride, without a support team or van, Lee's cell phone and laptop computer were among his most precious cargo. He logged daily updates from the road to a Web site, www.aridewithareason.org, which was edited and posted with help donated by Carl Chiacchierini, owner of Window Flair, and advisor to the Greece Arcadia High School Web Club in Rochester, NY.
Although Lee was alone on his ride, he had tremendous support from individuals and corporations alike—both in and out of the window coverings industry. He did not start out seeking corporate sponsorship, but several companies came to his aid supplying product and services including Cannondale, which supplied Lee with a new touring bike, and United Airlines, which flew Lee to California to begin the ride.
"The fundraising actually took much more time and energy than I thought," Lee says. He reasoned that a penny a mile from each supporter, whom he dubbed Spokes-people, would be well within his reach—about the cost of two tankfulls of gas or a few Starbuck's coffees. He would need 1,000 contributors. Instead, Lee's contributors numbered close to 450, but each averaged more than $180 in donations, five times what Lee anticipated.
"I didn't work this as well as I should have going after corporate sponsorship," Lee admits. "But I called a couple and the one that responded without hesitation was Hunter Douglas. They jumped right in and committed dollars up front, which today is still the largest single amount that anyone has donated." A call then went out to Hunter Douglas independent fabricators and well more than half of them responded, Lee adds.
"One of the things that makes me feel very good is that we have a tough, competitive business . . . who do you trust, who don't you trust from a business standpoint. We're all selling the same products and we get fairly aggressive with one another as independent and company fabricators. To see them come back so generously to help was very heartwarming," Lee says.
Lee's ride came to an end in mid-May, but his efforts haven't stopped. His goal now is to maximize what he began with A Ride With a Reason partly through an awareness campaign centered on the media. "Originally my goal was probably more financial than awareness, but as I end the ride I realize how important the awareness of ALS is," he says.
He figures there are two ways to run his story: as a tragic story or as a good story. "The tragic story is that 14 people a day are dying a drastic, gruesome death," he says. He estimates that during the 73 days of his ride, more than 1,000 ALS patients died. "If they want to make a good story out of it, here's an individual doing something about it and 450 people who have made it a success," Lee explains.
Lee plans to work with the Les Turner ALS Foundation (www.lesturnerals.org) based in Skokie, IL. It is the nation's largest independent, publicly supported, non-profit organization devoted to the treatment and elimination of ALS. But as a goal-oriented person Lee has another dream he'd like to make come true.
"June 19, 2003, will be the 100th anniversary of Lou Gehrig's birth," Lee says. "The question is, why can't we rally the baseball community—and I mean from George W. Bush and his T-ball league to every Little League and every American Legion team right up to the major leagues—and devote a day, a week, a month, whatever to reminding people what a great athlete Lou Gehrig was and that this disease can take down The Iron Horse. Let's put the money issue behind it, give the researchers whatever they need and put the brain power to it."
To that end, Lee has begun working with the Society of American Baseball Research (SABR), which works to keep alive baseball history. Lee can see ad agencies and PR agencies getting behind this effort pro bono and making one big event that can raise enough dollars to accelerate research to come up with answers to ALS.
The next six months or so will determine whether Lee's dream is possible. If it is, that will pretty much determine the course his life for the next two years. "I can't think of anything better to be spending my time on right now," Lee says.