3/02/2011 Jill Colford Schoeniger ’86

"Never Give Up"

Tom Kramer ’89 keeps racing for a reason. Her name is Pam.

  • Tom rides his bike during the 112 miles of cycling at the Ironman World Championship Triathlon in Hawaii, which also included 2.4 miles of swimming and a full 26.2-mile marathon. Tom rides his bike during the 112 miles of cycling at the Ironman World Championship Triathlon in Hawaii, which also included 2.4 miles of swimming and a full 26.2-mile marathon.

For someone who is supremely optimistic, Tom Kramer ’89 has the worst luck.

Fifteen months ago, just before he was to have back surgery for a herniated disk, he came down with a staph infection and spent four days in the hospital. Then, last July he had a second infection (another four days in the hospital). Finally, in November, he was rear-ended in his car and had to have emergency neck surgery, spending an additional six days in the hospital.

But none of that is slowing Tom down. In the past year he has competed in the Paris Marathon, the Ironman 70.3 EagleMan, the Ironman 70.3 Timberman, the Rock ’n’ Roll Philadelphia Half-Marathon and the granddaddy of them all, the Ironman World Championship in Hawaii. Next up, in April, is the Country Music Marathon in Nashville and the Broad Street Run in Philadelphia.

Tom is racing for a reason: to raise awareness of the critical need for bone-marrow donors. That, and to find a bone-marrow match for his wife, Pam.

Pam has myelofibrosis. The disease involves the proliferation of an abnormal type of bone marrow stem cell, which over time results in the replacement of bone marrow with connective-tissue fibers. As a consequence, the patient can produce fewer and fewer red blood cells. Symptoms include bone pain, an enlarged spleen, fatigue, shortness of breath and susceptibility to infection, such as pneumonia.

In patients as young as Pam, the condition often progresses slowly; Pam was diagnosed 12 years ago. But ultimately it is fatal. The only viable long-term treatment is a bone-marrow transplant. And Pam is running out of time.

“We’re reaching the point where it’s more art than science,” Tom says. Because of risks for problems such as rejection and infection, her doctors at the University of Pennsylvania don’t want to perform the procedure until it’s absolutely necessary. But they know that day is approaching. “The doctor visits have a more serious tone now,” Tom says.

Looking for a Match

Like Pam, 10,000 people who need a bone-marrow transplant seek a match each year. Only about 4,000 find one. In fact, 70 percent of people will not find a match among family members.

That means they have to turn to a donor registry like the one run by the National Marrow Donor Program. Some 8 million donors—about 2.6 percent of the U.S. population—have registered.

None of them is an ideal match for Pam.

So Tom is racing to find donors—for his wife and for everyone else who needs one. “No one should have to go through what we’re going through, going to the doctor every couple months, always wondering when the other shoe is going to drop,” he says. “We know we might not ever cure this disease. But we at least want people to have a chance.”

Tom and Pam operate a website, www.racingtoregister.com, where they share their story, encourage people to register for donation and provide information about bone-marrow transplants. “There are a lot of myths around bone-marrow donation, such as that it’s dangerous,” Tom says. While no medical procedure is risk-free, the National Marrow Donor Program reports that more than 98.5 percent of donors feel completely recovered within a few weeks, and only 1.34 percent of donors have a serious complication.

They also travel the country to ask for donations, both monetary and otherwise. In the past year they have raised about $25,000 and recruited hundreds of potential donors. “Pam tells her story, and then I give a motivational talk,” Tom explains. “Our message is, ‘Never give up.’”

  • Tom (center) celebrates the finish of the Ironman World Championship with his brother, Andy, and his wife, Pam. Tom (center) celebrates the finish of the Ironman World Championship with his brother, Andy, and his wife, Pam.

And then there are Tom’s races. He had always been an avid athlete. He grew up swimming. At F&M he played soccer. When he finished college, he took up running. He completed his first triathlon in 1991.

He now races as often as he can. But he only competes in events where he can set up a table to register people for bone-marrow donation. “At this point in my life I’m doing it for the bigger picture,” he explains. “This is a vehicle that allows me to talk to people about joining the donor registry.”

And he is getting attention. When he competed in the Ironman World Championship in October, NBC Sports was there. He also has attracted a number of sponsors, including Philadelphia Insurance Companies, Oakley, PowerBar, Saucony, CEP and Penguin Brands. His family is equally supportive; his mom showed up unannounced to watch him race in Hawaii. His brother, Andrew Kramer ’85, was also there.

But Tom reserves particular gratitude for Bill Hauser, his “amazing” coach. Hauser is founder of Mid-Atlantic Multisport, based in Malvern, Pa., near where Tom and Pam live. “Bill’s son, who is 4 now, had leukemia,” Tom says. “So we have that link; we went through that together.”

KeepIng the Glass Half-Full

When Tom is preparing for an event, he spends 18 to 20 hours a week training. On a typical day he is up at 4:30 in the morning and off for a swim. After a full day of work, he runs or cycles or swims again. An intense week could involve 10,000 meters of swimming, 40 miles of running and 200 miles of cycling. “My car has become my locker room,” he says. “I had the windows tinted, because I change in there so much.”

In between workouts, he works. Tom is senior vice president for Jones Lang LaSalle, a provider of commercial real-estate services. The company is also one of Tom’s sponsors.Pam works as well, handling sales and marketing in the United States and Canada for Universal Electronics, a maker of wireless electronic devices. “One of the big things with Pam is, she doesn’t want to give up anything in her life, even with the disease,” Tom says.

In fact, Pam has taken up running— against the wishes of her doctors, and despite that her condition leaves her easily winded. Tom and Pam will both do the Broad Street Run and the Philadelphia Triathlon (where they will hold a registry drive at the race expo center) this year. “We’ll cross the finish line together,” Tom anticipates.

When they are not working or raising awareness or running long distances, they spend time with Brinkley, their beloved golden retriever. The couple is determined to think of Pam’s condition as an inconvenience, not a fatal disease. “Pam and I always think the glass is half-full,” Tom says. “We know we’re going to find a match.”

In the meantime, Tom will keep racing. After the Broad Street Run there is the Musselman Triathlon in Geneva, N.Y., the Ironman Lake Placid, N.Y., and the Berlin Marathon. “I’m not going to stop,” he promises. As Tom and Pam always say: Never give up.

A Gift from the Bones

Every year, thousands of people need a bone-marrow donation. And every year, thousands wait in vain for a matching donor.

Want to help? Registering to be a donor is easy. There is no blood test involved, just a cheek swab. For the donation itself, most are peripheral blood stem-cell donations, which are a lot like giving blood. For those who actually donate marrow, it is a one- to two-hour outpatient procedure.

Find out more from organizations such as DKMS Americas (www.dkmsamericas.org) and the National Marrow Donor Program/Be The Match Foundation (www.marrow.org).

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