When the doctors told Rachel Mindrup that her son, Henry, had neurofibromatosis at just four months old, she had never heard of it before. Since then, she has become an active and influential advocate for the NF community through painting portraits of people with the disorder.

NF is a genetic condition that causes tumors to grow on nerve tissue. However, the type and location of tumors varies from person to person, which makes it difficult to identify.

In Henry’s case, he has five brain tumors. On the outside, he looks just like your average 22-year-old, but he’s been getting brain surgeries for his tumors for a majority of his life. His last brain surgery was December 2024, but another brain tumor remains, so it’s a cycle, Mindrup said.

It was difficult for the Mindrups when Henry entered kindergarten. His teachers were not familiar with NF and struggled to accommodate him. “How do you expect people to be helpful if they don’t know what you’re talking about?” she said.

She wanted to do more, but was unsure how to help. Until she realized she could contribute with something that she was good at—art.

After receiving her BFA from the University of Nebraska–Kearney in 1996, where she combined her love of art with visual communications, she went on to the Art Academy of Los Angeles with the goal of becoming a Disney animator. After a few years in Los Angeles, she went on to receive her MFA from the Art Institute of Boston.

One day on Facebook around 2010, she came across a man with facial deformities named Reggie Bibbs. In his goal of educating others about NF, he encouraged people to “just ask” if they saw something different, she said.

Inspired by Bibbs, Mindrup decided to paint his portrait in watercolor as a “thank you” for his advocacy. Bibbs asked her to paint his friend, Maurice Simpson, as well. The two changed their profile pictures to their respective paintings.

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