Stephen A. Inge, employee and son of the co-owner of the now-closed Iota Club, died earlier this month at the age of 41. For decades he fought a very rare disease known as Von Hippel-Lindau (VHL) syndrome. which causes tumors to grow all over the body.
In his memory there will be an outdoor meetup at 2:00 p.m. this Saturday, May 15th at Knights of Columbus on Little Falls Road
Instead of flowers, the family is asking for donations to the VHL Alliance.
Inge was the son of Jane Negrey Inge who (along with her brother) owned the popular Iota Club music and arts venue in Arlington. The club closed at 2832 Wilson Blvd in Clarendon in 2017 after more than two decades.
Stephen worked there for several years as an administrative assistant and with musicians on their preparations for the show.
“He’s always been very proud of Iota and his contribution to Arlington,” Jane Negrey Inge told ARLnow. “He would always tell me that.”
Stephen attended Yorktown High School and was a pitcher on the baseball team. Shortly after graduating from high school, he had his first medical event and was diagnosed with VHL. He had to perform a series of operations, scans, and recoveries.
VHL is a rare disease with only about 10,000 cases in the United States. It causes tumors to grow throughout the body, including those that are both benign and malignant. More often the disease is transmitted genetically. However, Stephen’s case was a de novo case, meaning it was related to a spontaneous genetic mutation and was not inherited from a parent.
“Stephen had a great job at VHL and was studying the implications,” says Jane. “After five brain surgeries, two spinal cord surgeries, partial nephrectomy and other incidents, he just wants to be as happy as possible and see his friends.”
“His legacy is to love people in the church, to love friends,” she says.
He loved making people laugh, especially his doctors, his mother says, and had the same group of friends from his time in public schools in Arlington. More recently he fell in love with horticulture and frequently found potted plants on Franklin Road near Clarendon. He considered it “the best occupational therapy ever,” notes Jane.
Stephen also spent a lot of time in Richmond with his father Barclay Inge and his family.
Prior to joining the Iota Club, he was an assistant teacher for students with special needs at Swanson Middle School in Westover. His mother says he has a natural talent because he understood the students.
“Stephen was very intuitive … and very sensitive to the needs of the children,” says Jane. “And he loved the job.”
However, when another spinal cord operation restricted his mobility, he helped his mother and uncle at the Iota Club.
Stephen worked there for about six years under his good-natured pseudonym “Burns” and befriended other employees there.
“It was family,” says Jane. “Without [Iota’s staff] Support, I wouldn’t have been able to get involved with Stephen’s medical problems like that. Like family, they all helped my brother and me keep Iota going … people care about people, and I’m telling you, I’ve seen so much of it. It is wonderful.”
About 13 months ago, right at the start of the pandemic, Stephen began living independently for the first time. His mother says it was an incredible achievement for him and the family. The pandemic made it complicated, of course.
“It forced us to really be apart, which was beneficial in a number of ways,” says Jane. “But it prevented us from having contact that I would have liked to have had.”
Jane knows she isn’t the only one whose heart is now broken with her son’s death. So she looks forward to meeting tomorrow afternoon to hear everyone’s memories and celebrate Stephen’s life.
When asked what she will remember most about her son, Jane said “everything”.
“I will remember everything about him. His mind, his mind and his mind, ”she says. “I will think of him forever every day … He is my heart.”
Photo courtesy Jane Negrey Inge
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