The parents applaud.

Gutmann takes a hands-off approach to Club NF. "Other people come up with these things," he says. "I just say, 'What cool things can we do?' and other people come up with them."

But things like Club NF and the iPad apps fit with his philosophy that the NF Center should treat the whole patient, not just the tumors and neurons.

Dr. David Gutmann in the lab. He has been studying NF1 for more than twenty years. Slideshow: Kids with NF1 and their families at "Club NF"
Jennifer Silverberg
Dr. David Gutmann in the lab. He has been studying NF1 for more than twenty years. Slideshow: Kids with NF1 and their families at "Club NF"

"If you have an ego, you need to get out of science," he says. "Most of what we do now will, in 50 years, be a footnote. I've moved the field along. None of us are in it to be the face of NF. Fifty years from now, the best I can hope for is that someone will read one of my journal articles and say, 'That was cool — for that time.' I'm OK with that. We've made small, incremental advances."

Gutmann still hopes to be able to raise the disease's public profile.

"In the Jerry Lewis telethon, you have the kid who can't walk," he explains. "It's easy to tug at the heartstrings and get people to write a check. With NF you have relatively normal kids with issues, or something really difficult to look at, like the adult with thousands of neurofibromas. Then you cross the line of empathy. It's a tough line to walk. You don't want to scare people off. NF1 patients are normal people with unpredictable lives."

Gutmann hasn't had much trouble, though, winning grants to fund his work in the lab. His latest project, funded by the James S. McDonnell Foundation, is to map the ecosystem of a mouse brain tumor. Like a diagram of an ecological ecosystem, the map will account for every single cell, protein, system and neurological pathway and how all the pieces work together.

"We want to take the system apart and see what makes it possible for it to function," he says. "No one has ever tried anything like this before."

Like Gutmann's previous collaborations, the project will involve researchers from disciplines throughout the university and beyond, from neurologists to mathematicians to radiologists to technicians who've developed microscopes to examine the individual cells. "It'll take us a year of quality first dates before we're all able to talk the same language," he says.

He's not sure if this map will be the one true guide to understanding the more puzzling aspects of NF1 that still elude him. In the meantime, he'll still be seeing patients and continuing his lab and clinical research.

"I'm fortunate to be able to do what I'm doing," he says. "People gripe about the changes in medical practice, the NIH's shrinking budget. I'm lucky. I have an opportunity every day to take care of individuals whose conditions I understand well. Then I get to unravel more of the mystery in the lab. I have a fantastic group of people in the NF Center to talk with. I can see what the future might look like. It's exciting to be part of that, exhilarating and fun."

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