Being a ‘little voice’

• By ELLYN COUVILLION
• Advocate staff writer
• Published: Oct 17, 2009

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Aaron Posner, 12, has decided that instead of receiving gifts next spring when he becomes a bar mitzvah, a Jewish boy who’s reached the age of religious responsibility, he’ll invite people to consider donating to research.

He’s got a specific research recipient in mind, the Washington University Neurofibromatosis Center, in St. Louis, Mo.

Aaron has gone to the center at least once a year since he was 3 years old. He was born with neurofibromatosis type 1, or NF1, a common genetic disorder in which children and adults have a predisposition to develop tumors.

Aaron, an honor roll sixth-grader at Episcopal, takes it in stride and is doing well.

Aaron says NF isn’t bad for him, but it can be bad for other people and that’s why he wants to help, said his mom Linda Posner (pronounced with a long “o”).

“It’s a rare child who wants to do that,” Aaron’s physician in St. Louis, Dr. David Gutmann, founder and director of the NF Center housed at Washington University’s medical school, said of Aaron’s being so open and proactive about NF1.

“That’s how change happens, (through) a ‘little voice.’ Everyone needs to rally around it,” Gutmann said. 

At the invitation of Aaron and his family, Gutmann visited Episcopal High School on Sept. 21, to explain to the students what NF1 is and how researchers are finding ways to treat it. 

Throughout the morning, he met in school assemblies with lower school, middle school and high school students, as well as in smaller biology classes.

Aaron introduced Gutmann before the physician addressed close to 300 middle school students.

“In March I am turning 12 and will become a bar mitzvah,” Aaron, who attends Beth Shalom Synagogue, told his classmates.

“That is when a Jewish boy becomes a Jewish adult and must try to follow all of God’s commandments. The purpose for the commandments is to make the world a better place,” he said, reading from a paper he had written.

“I was born with neurofibromatosis — NF1. I would just bet you have no clue what I’m talking about. This is why this guy is here. This guy’s name is Dr. David Gutmann,” Aaron said, as Gutmann stood nearby.