LAKE PLACID — Triathlons have been part of Tom Kramer's life since the early 1990s, and he'll tackle the Ford Ironman Lake Placid on Sunday.
It takes a lot for him to swim, run and bike in the grueling competition. But compare that, he says, to what is faced by those with diseases requiring bone-marrow transplants.
"The pain that they go through is far worse than any discomfort we may go through," he said.
That's why in 2009 he created Racing to Register, a nonprofit organization dedicated to finding bone-marrow donors.
Kramer, 45, knows what the pain is like because he lives with someone who has dealt with it for 13 years — his wife, Pam. She was diagnosed with essential thrombocythemia (ET), a blood disorder that causes an elevated number of blood platelets. The diagnosis came with a potentially devastating unknown.
"One of the potential risks of ET is it can convert to myelofibrosis, which is essentially a deterioration of the bone marrow," Kramer said.
That's what happened in Pam's case; the only cure for the rare disease is a bone-marrow transplant.
"It's like hearing you could die one day," Kramer said. "When you hear that news, it's pretty scary."
SEARCH FOR HELP
The couple began searching for help almost immediately, traveling across the country to visit doctors for different opinions and to find a potential marrow donor. It was in October 2009, while searching for a donor, that Kramer decided to try to get the word out that donors were needed.
"What I learned is there are so few people in the donor base, and what I started to realize was that nobody really knew about it," he said. "I sat down and put up this website, and I decided that I would do a marathon and four Ironman races in five months and we could use that as a platform."
RACING TO REGISTER
Racing to Register was born to show others that the sacrifices made for endurance racing are far more than those to simply get tested as a potential bone-marrow-donor candidate.
"There is certainly a link between the pain that patients go through, and if they can go through all of that, then we should be able to take two minutes to help them," Kramer said.
Anyone age 18 to 60 is eligible to take the test, which consists of swabbing the inside of each cheek for cells. And while the actual donation can be more painful after it is done, marrow is taken from the hip under anesthesia, so donors don't feel anything as it happens.
IRONMAN LAKE PLACID
Kramer, who lives in Malvern, Pa., has traveled roughly 26,000 miles around the world to compete in various endurance events. This weekend, he has come to the North Country to swim 2.4 miles, bike 112 miles and then run a marathon, 26.2 miles, all to make people aware that getting tested is a simple way to possibly save someone's life. But getting to this race hasn't been easy.
Kramer was involved in a car accident in Philadelphia in November 2010 that sent him to the hospital for emergency neck surgery. He scratched from the other races on his 2011 calendar to recover and prepare for the Lake Placid race. Then knee pain hit, causing him to consider skipping this race as well.
"Then I thought to myself, 'If I don't suffer through this race, then I'm a complete hypocrite because that's what the whole charity is about,'" Kramer said. "Endurance sports is suffering similar to what these people go through."
HOPE FOR PROGRESS
Kramer will be racing for Pam this weekend, but also for all of those who need a marrow transplant. Racing to Register has led to 1,200 people getting tested and one match to a patient. Racing to Register has also led Kramer to look at his wife's disease as a positive because without it, someone may still be searching for a donor.
"I look at Pam's disease as a blessing because we've learned how to help other people," Kramer said. "The reason that I put so much into it is because I know that we're seeing (positive) signs — we had somebody match."