Steve Janowiak of Brookfield might be an Ironman, but he understands as well as anyone that nobody is really made of iron.
Janowiak, 35, knows because on Sept. 19, 2003, just weeks before he ran his first Chicago Marathon, his wife, Joanna, was diagnosed with the rare bone marrow disease Aplastic Anemia.
Two years later, Joanna, 31, has chased the illness into 100-percent remission, but the Janowiaks still think about their battle, which is why Steve recently competed in the Ironman Wisconsin triathlon in Madison, Wis., to help raise money for the Aplastic Anemia & MDS International Foundation (AA&MDSIF).
"We feel very fortunate that she's as healthy as she is now," Janowiak said. "That's one of the reasons I'm such an advocate for it now. Aplastic Anemia is one of those illnesses we call an 'orphan disease,' because research for it falls by the wayside."
Janowiak says the reason for that is because it only affects 2-3 people per million in the population, the disease isn't a priority for either pharmaceutical companies or research hospitals. It also doesn't enjoy the same level of fundraising efforts that other diseases do.
Research through clinical studies is what lowered the mortality rate of the disease from near 80 percent 20 years ago to around 30 percent today. With the relatively low cost to fund a new clinical study ($60,000), Janowiak felt it was a worthwhile sacrifice to help get more research off the ground.
"Without the money people raised for new research 20 years ago, my wife might not be here today," he said. "Even now the treatment she received only helps about 70 percent of the people that have it. Now I feel like the money we raise now can help that last 30 percent. Research has made so much progress in such a short time. I want to help push it over the goal line."
Once his wife had the disease in remission in late October of 2004, Janowiak said he switched from caregiving mode to fundraising mode. With no experience with raising money for charity, he went to the AA&MDSIF for help.
"I basically called them up and said I had this idea," Janowiak said. "I'd like to race in this triathlon so I could use the event as a backdrop to raise money. They set up a special account for all the money that was donated and helped me keep track of it. They also gave me pamphlets and donation envelopes I could hand out."
Janowiak was an experienced marathoner who had run his first triathlon in the spring of 1996. He also ran the Chicago Marathon in 2003 and 2004. But he never imagined competing in anything as grueling as the 140-plus-miles Ironman Wisconsin.
The course entails a 2.4-mile swim, a marathon-distance 26.2-mile run and a 112-mile bike ride through hilly central Wisconsin. Janowiak decided he'd need coaching, so he went to Brett Peterson of Brookfield.
"During the winter we spent a lot of time working on technique," Peterson said. "We worked on his swim technique, and on his running style. We also did physiological testing to see just how far we could push him."
Between that winter and the September contest, Janowiak would endure seven-hour bike rides and 20-mile runs while swimming between two and four times per week. Peterson also had Janowiak focus on shorter exercises to keep every activity programmed into his muscle memory.
Peterson is quick to point out that the most difficult part of a triathlon is making it to the starting line injury-free, making eight hours of sleep each night essential. He also said the mental aspect can't be overlooked either, especially as athletes hit an emotional wall as training increases in the months before the event.
"Steve definitely went in mentally prepared," Peterson said. "We spent the last couple weeks talking about that because it is an extremely long day and you're out there all alone. I think he was helped by having a goal like raising money for charity. That's why he wanted to do this race."
The training also exacted an emotional toll on Janowiak's family, friends and even his workplace at times. The time commitment required for training took away from everything else in his life, but he said almost everyone was understanding and accommodating when they could be.
"I think what helped the most was just telling as many people as I could why I was doing it," Janowiak said. "Sometimes my boss would be upset with me, but at the same time everyone knew it wasn't always going to be consuming my time. And it wasn't like I was doing it for myself."
"It was miserable because he was gone all the time," Joanna said. "But that (he was raising money for charity) was all I had to think about to feel better."
When race day arrived, Janowiak and more than 2,000 others endured 92-degree heat in Madison that day. The hot weather contributed to the highest dropout rate (19 percent) in the event's history. But he still finished in 13 hours 17 minutes and 45 seconds. That placed him 644th overall and near the top third in his age group.
However, where he finished was less important than having finished the race and raised the money.
"As I was running I saw someone holding up a sign that I thought summed it up pretty well," said Janowiak, who would cross the finish line in front of hundreds of cheering fans. "It said, 'Holy (expletive deleted), you're doing an Ironman!'"
Janowiak's race raised more than $15,000. And he says he won't be doing another Ironman in the near future, but he does have other ideas on how he can raise more money to get to his $60,000 target.
"I might try helping others train for smaller events to help raise money," he said. "I might also try to get together something like a 10K run in Brookfield. I'll be talking with AA&MDSIF to come up with other ideas. But to have athletes help raise even $500-1,000, which isn't difficult, it could help lead to another great leap forward for research."
Anyone interested in donating to help fund a new clinical study can make a check or money order out to AA&MDSIF and send it to: Steve and Joanna Janowiak, P.O. Box 54, Brookfield, IL 60513. A diary kept by the Janowiaks during Joanna's illness is also available online at http://home.earthlink.net/~bzl763/)