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Wednesday, April 30, 2025 at 4:37 PM

NF AWARENESS MONTH

LETTER TO THE EDITOR

May is National Neurofibromatosis (NF) Awareness Month.

NF is a genetic disorder that causes tumors to grow on nerve tissues. They can grow anywhere in your nervous system, including on your brain and spinal cord. It can also cause optic glioma, and Lisch nodules, bone deformities, learning disabilities, fine and gross motor skill delays, and multiple Café au lait spots.

There are 3 types of NF. NF 1, NF 2, and Schwannomatosis.

NF 1 is the most common and affects approximately 1 in 3000 individuals. Fifty percent of those inherit the disorder and fifty percent get it from a spontaneous mutation on a very-long gene found on chromosome-17.

In 2020 the FDA approved the drug, selumetinib, for children aged 2 and older, and recently, mirdametinib (Gomekli) for both adult and pediatric patients. Both drugs are designed to help slow tumor growth.

Sheila Zavorka Lakehills


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