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Ben’s Run: Local charity makes strides in leukemia care

Ben Goldfogle battled for his life through six years of chemotherapy and two bone marrow transplants. He died on September 3, 2009, one month before his 12th birthday. (Courtesy the Goldfogle family)

WASHINGTON — Ben Goldfogle was your average, sweet, lovable little kid.

But one day, he got sick in kindergarten with an unexplained fever. Within 24 hours, he was diagnosed with leukemia.

“It was just unbelievable news; we just could not believe this was happening,” recalls his mom, Clare Goldfogle.

Her son battled for his life through six years of chemotherapy and two bone marrow transplants. But nothing worked, and Ben died on Sept. 3, 2009 — one month before his 12th birthday.

His mother turned to running as a way to cope with her grief, finding solace in regular runs through the streets of her Silver Spring neighborhood with a group of supportive friends.

“Everyone knows in the blink of an eye, it could be their child,” she says.

And over time, she came up with an idea — a neighborhood run each spring in Ben’s name to raise money for Children’s National Medical Center, where they tried so valiantly to save his life.

Ben’s Run began in 2011 with 800 participants. By 2013, they were closer to 1,200, and had expanded their fundraising to include a website and a silent auction.

Last year, Ben’s Run raised $75,000, and the hospital suggested using the money to fund a specific research project aimed at helping kids who, like Ben, do not do well after a bone marrow transplant.

These transplants are the last resort for the sickest of the sick leukemia patients and for many children, they work well. But 20 to 30 percent of the kids who get a transplant, like Ben, either relapse or develop complications.

Dr. David Jacobsohn, chief of the Division of Blood and Marrow Transplantation at what is now called the Children’s National Health System, says that when this happens, “the chance to get them into remission at that point, and to get them cured at that point, is exceedingly low.”

The research being funded by Ben’s Run is looking for new ways to detect a relapse early on, when it is most treatable. The researchers are also conducting clinical trials on two medications that might help give these kids a fighting chance.

It’s one of many research projects at the Children’s National Health System. But the others are largely funded by corporations or wealthy donors. This one stands alone in that the money is coming from an effort spearheaded by one middle-class family in one suburban community — the Stonegate neighborhood of Silver Spring.

“I would say we don’t see that too often,” says Jacobsohn, adding that “it is different from the norm; it is really amazing.”

He says the doctors and nurses who were involved in Ben Goldfogle’s care have taken an active interest in the project, and it has become “very personal” for the staff.

It is also very personal for the Goldfogle family. Clare Goldfogle says she believes that Ben would think the race and the research it funds is “pretty cool.”

“I know he is smiling and very happy that we are doing this for kids who, like him, really need extra help.”

The fourth annual Ben’s Run will be Saturday, April 5. See all the details on the event’s website.

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