Stephen A. Inge, employee and son of the co-owner of the now-shuttered Iota Club, died earlier this month at the age of 41. He battled for decades a very rare condition known as Von Hippel-Lindau (VHL) syndrome, which causes tumors to grow throughout the body.

In his memory, there will be an outdoor gathering at Knights of Columbus on Little Falls Road this Saturday, May 15 at 2 p.m.

In lieu of flowers, the family is requesting donations to the VHL Alliance.

Inge was the son of Jane Negrey Inge, who co-owned (with her brother) the well-known Arlington music and arts performance venue Iota Club. The club closed in 2017 after more than two decades at 2832 Wilson Blvd in Clarendon.

Stephen worked there for a number of years, as an administrative assistant and with musicians on their pre-show arrangements.

“He was always very proud of Iota and its contribution to Arlington,” Jane Negrey Inge tells ARLnow. “He would always tell me that.”

Stephen attended Yorktown High School and was a pitcher on the baseball team. Soon after high school graduation, he had his first medical event and was diagnosed with VHL, needing to go through a series of surgeries, 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 ones that are both benign and malignant. More often, the disease is transmitted genetically. But, in Stephen’s case, it was a de novo case, meaning it was related to spontaneous genetic mutation and not inherited from a parent.

“Stephen had a big job with VHL and dealing with the effects of it,” says Jane. “After five brain surgeries, two spinal cord surgeries, partial nephrectomy, and other events… he would just want to be as happy as he could and see his friends.”

“His legacy is loving people in the community, loving his friends,” she says.

He loved to make people laugh, especially his doctors, says his mom, and had the same group of friends from his days at Arlington public schools. More recently, he became enamored with horticulture and could often be found potting plants on Franklin Road near Clarendon. He thought of it as the “best occupational therapy ever,” Jane notes.

Stephen also spent a considerable amount of time in Richmond with his father Barclay Inge and his family.

Prior to working at Iota Club, he was a teacher’s assistant for special needs students at Swanson Middle School in Westover. He was a natural at this, says his mother, because he understood the students.

“Stephen was very intuitive… and very sensitive to the needs of the kids,” says Jane. “And he loved the work.”

However, when another spinal cord surgery limited his mobility, he turned to helping his mom and uncle at the Iota Club.

Stephen worked there for about six years, under his good-natured alias “Burns,” befriending other staff there.

“It was family,” says Jane. “Without [Iota’s staff] support, I wouldn’t have been able to be so involved in Stephen’s medical issues. Like a family, they all helped my brother and I keep Iota going… people take care of people and, I’m telling you, I’ve seen so much of that. It’s beautiful.”

It was about 13 months ago, right at the beginning of the pandemic, that Stephen started to live independently for the first time. His mom says it was an incredible achievement for him and the family. Though, of course, the pandemic complicated it.

“It forced us to really be seperate, which was beneficial in a lot of ways,” Jane says. “But it prevented us from having contact that I would have liked to have.”

Jane knows she’s not the only one whose heart is now broken with the death of her son. That’s why she’s looking forward to tomorrow afternoon’s gathering to hear everyone’s memories and to celebrate Stephen’s life.

When asked what she’ll remember most about her son, Jane said “everything.”

“I’ll remember everything about him. His grit, smarts, wits,” she says. “I’ll think about him every day forever… He’s my heart.”

Photo courtesy of Jane Negrey Inge

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