Painting A New Picture: The Many Faces Of NF
March 1st, 2013
Neurofibromatosis is the most common genetic disorder in the world. An estimated 100,000 Americans have it, impacting people of all races, genders, and socioeconomic status. Even though it’s so common, experts say many people don’t know about the disorder, and that’s what a Nebraska artist is trying to change.[audio:https://kvnonews.com/wp-content/uploads/2013/03/3-1-13-NET.mp3]
On a cool winter night in downtown Omaha, dozens of people pack into the Slowdown Bar. They grab a drink, a slice of pizza, and quietly chat with friends. But this isn’t the average night on the town.
After settling into their seats, the crowd waits anxiously for the Science Café to begin.
An outreach event of the University of Nebraska Medical Center, Science Cafés offer the public a chance to learn about scientific topics in a casual environment. Each meeting is focused on a particular topic, with a scientist giving a brief explanation of the issue.
The scientist at this meeting is Dr. Sean McGarry, an assistant professor of musculoskeletal oncology (bone and soft tissue cancer) at UNMC. The topic to be discussed is Neurofibromatosis, or NF.
Dr. McGarry explains to the dozens in attendance NF is a genetic disorder made up of three distinct gene mutations which cause tumors to grow on nerves.
It’s the most common genetic disorder, affecting 1 in every 3000 births. That means in a state like Nebraska, with a population of 1.8 million, about 600 people have NF.
“The gene itself makes a protein called a tumor suppressor, which is basically a set of brakes for cells in our body in how they divide and multiply. So if you cut the brakes, then these cells divide and multiply and divide and multiply, and make large tumors,” Dr. McGarry said.
Dr. McGarry describes how people with NF can have a wide range of symptoms, from light brown spots on the skin, called Café Au Laut’s, to the large disfiguring tumors, known as neurofibromas, which can turn cancerous. There’s no cure for NF, and treatment is limited.
While the search for a cure continues, an Omaha artist is using her craft to put a face on the disorder.
Rachel Mindrup paints portraits of people with NF as part of a series called the Many Faces of NF.
At events like the Science Café, Mindrup said she can use her paintings to illustrate how the disorder affects people of all races, genders, and socioeconomic status. It’s an issue close to her heart.
Nine years ago, Mindrup’s son, Henry, was diagnosed with NF. He was four months old.
“He’s got an optic glioma, so on his left optic nerve he’s got a tumor growing there. He’s got some tumors on his brain. He’s got neurofibromas growing on his chest and near his spine,” Mindrup said, describing how NF has affected her son.
On the day she learned of Henry’s diagnosis, Mindrup said the only way to describe how she felt was like she was underwater. She said she knew things were happening around her, people were talking to her, but she couldn’t make anything out clearly.
But then Mindrup decided to make a change. She started using her talents as an artist to make a difference. She reached out to a man named Reggie Bibbs. He’s a spokesperson for NF and director of the Just Ask Foundation, an organization dedicated to raising awareness about the disorder. She asked to paint his portrait. Bibbs’ portrait would be the first in her series.
Bibbs said from the moment he saw Mindrup’s portrayal of himself, he loved it.
“I think it’s a great way to portray NF. Every picture that she paints is just amazing. It doesn’t matter how we are affected with NF, but when she paints our picture the way we really, really look, then you can just see that beauty, and I think it’s really amazing,” Bibbs said.
Mindrup said she credits Bibbs with inspiring her to get involved in NF awareness through art. She said if Bibbs, who has large facial tumors and lost a brother to NF can have a have a positive impact, she can too.
To date, Mindrup has completed 67 portraits of people all over the world. She has requests for another 17 waiting to be done. All she asks in return is for people to donate, in one way or another, to their local NF groups.
While looking through some of the portraits, she came across one which reminded her of a man who wondered if he’d done enough fundraising to meet her requirements.
“He sent a message saying he’d raised $90,000 and was wondering if that was going to be enough? Which he doesn’t know my sense of humor, but I told my husband ‘should I email him back and say I’m sorry, another $10,000 and I’ll consider it?’” Mindrup mused, giving a hearty laugh.
As she continued thumbing through portraits, however, she was quick to point out not every portrait has a happy story to go with it.
She came across one portrait in particular which caused her to take a moment and think about the severity of NF.
“This one’s heartbreaking. Dawson passed away in October, and that’s heartbreaking, he was only 13. And he was on my list to do when he was still alive, so I felt a little bad that I didn’t get to it in time, so by the time I finished this one, it was a memorial,” Mindrup said softly, as a tear came to her eye.
With both happy and sad stories, Mindup’s Faces of NF series is helping to erase some of the stigmas associated with the disorder.
David Ware had his portrait done last year.
As we sat in his mother’s basement, he explained his disorder. “I have a tumor on my brain. I have a tumor in my midbrain. I have optic gliomas, and I have a tumor on my neck and back.”
Ware, who is 58-years-old and lives in Lincoln, was diagnosed with NF when he was 10 years old. He said at a time with no social media and little research on the disorder, it was easy to feel isolated.
“There was a time I thought I was the only person in the world that had it. When I was in grade school and junior high, I thought I was the only person that had it,” Ware said.
Of course Ware now knows he’s not alone, and soon, the world may know his story.
Mindrup said one of her goals when she started painting these portraits was to eventually turn them into a book which will include a small biography about each person she’s painted.
By creating more resources for people affected with NF, Mindrup said she can help paint a better picture of the disorder and those who live with it. She admitted it may be a daunting task, but one she’s up to doing, one portrait at a time.
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