Topeka family works to “shine a light” during NF Awareness Month

NF is a group of genetic conditions causing tumors to grow on nerves throughout the body. It affects people in many different ways.
Published: May. 15, 2023 at 4:58 PM CDT
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TOPEKA, Kan. (WIBW) - May is NF Awareness Month.

NF stands for neurofibromatosis, a group of genetic conditions causing tumors to grow on nerves throughout the body.

NF affects about 1 in 2,000 births. Dylan Pottorf of Topeka is one young fighter. He and his mom Sara visited Eye on NE Kansas to share how NF affects him, and how they hope to raise awareness.

Sara said Dylan has had some small tumors that have been visible on his skin, as well as cafe au lait patches. She said the main challenges for Dylan have to do with how the condition causes learning difficulties.

Dylan, who is 12 and attends Northern Hills Elementary School, said it can be difficult trying to explain to his peers how NF can make it harder for him to understand some things, and he says he has been teased because of it. Watch the interview to hear what Dylan has to say about it.

Sara said she hopes sharing Dylan’s story helps people understand the challenges he faces every day, even though he may not outwardly appear to have a major health issue.

The Children’s Tumor Foundation, a leading organization in the fight against NF, has a “Make NF Visible” campaign to showcase the many different ways NF can affect people. While Dylan’s case may not be visually obvious, other people with NF may have more prominent tumors; tumors causing persistent pain, hearing impairment, or vision loss; or tumors leading to loss of mobility or interfering with other physical function.

World NF Day is Wednesday, May 17. CTF is hosting a live online event at 7 p.m. CT that night. 13′s Melissa Brunner will cohost with CTF Ambassador Michele Holbrook. You can watch at Melissa’s nephew, Owen, is living with NF.

In addition, more than 200 locations around the world will light up blue and green to mark NF Awareness Month. Topeka’s Evergy Plaza will be among those doing so on Wednesday, World NF Awareness Day.