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'I just like a challenge': Diana Haberkamp leads Neurofibromatosis Midwest

Diana Haberkamp leads Neurofibromatosis Midwest

Diana Haberkamp is executive director of Neurofibromatosis Midwest, based in St. Charles.
Diana Haberkamp is executive director of Neurofibromatosis Midwest, based in St. Charles.

Diana Haberkamp is an Everyday Hero because she goes to work every day for a cause. Her husband has neurofibromatosis, but it started when her two small children were diagnosed with it also. She wanted to know everything about it in order to make sure that they got the best care.

“I’m always someone who wants to know things, so I joined the board and at that point we were just in Illinois,” she said. “I wanted to be ‘in the know’ and know what resources were available. That’s how I got into it. About eight years ago I became the executive director.”

Her children are now in their 20s, but she’s still working for people with NF at Neurofibromatosis Midwest, based out of St. Charles.

“There’s only myself and three employees, so my job is to run the organization,” she said. “It’s my job to follow our mission: We work on clinic, awareness, research, education and support [CARES].”

Haberkamp continued, “Because we’re small, I could also be working on the website, our database, going lobbying, going to conferences and talking to people who are affected.”

Her compassion for people with NF is huge. It’s a genetic disorder where tumors (usually benign) form around nerve tissue: the brain, spine or neurons. Although the symptoms are often mild, the location of the tumors can lead to a landslide of other issues, including problems with vision, hearing, cardiovascular function, pain and mental acuity. Sometimes the most debilitating symptom is the soft bumps that can develop in or under the skin that may lead to unwanted stares.

It’s that compassion that leads Haberkamp to do more than just the mission of her organization. Her anonymous nominator described it best, “Her late night phone calls to comfort those in the hospital, her weekend hours to make sure a doctor’s appointment has been attended and her personal crusade to relieve the pains and challenges of those she calls her family.”

Haberkamp demurred, “I just like a challenge.” For her it’s all part of the job – the job that she cares about so much, “I’m communicating with people at night all the time. I don’t feel that it’s right to make this a 9 to 5 job. If you’re affected or you have a child who was just diagnosed, people shouldn’t have to wait for business hours to talk to someone. I’m doing more than 40 hours a week.”

In addition to being an open ear on the end of an after-hours phone call, Haberkamp has a full plate.

“Research is important, but care is really left on the side ... ,” she said. “We’re trying to find more doctors and clinics and educate people with NF to get them to proper doctors ... . People need to be able to get to good doctors – especially adults.”

If Hamberkamp ever takes a break and gets a massage or goes hiking with her husband, she wants to know that her work will continue.

“I’d like to see that there was a change – that the NF community saw improvement in care and more hope,” she said. “I want them to see that there’s more community and support. A lot of people with NF are more isolated – a lot of them lead isolated lives because of their tumors, and it’s complicated. I want there to be communication and less isolation. I want it to be more well-known. Our new thing is that we don’t want anyone to fight alone.”

The Haberkamp lowdown

Who she is: Diana Haberkamp, executive director of Neurofibromatosis Midwest

Town: Bartlett

Age: 52

Family: Married with two adult children

Hobbies: Working, reading, relaxing and watching TV (“This is Us”), occasionally working out

Fun fact: “I have flown in a blimp.”

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