May 17, 2018 was World Neurofibromatosis Awareness Day, the main goal of which is to raise awareness of the genetic condition neurofibromatosis (NF). Sadly, many people are unaware that the condition even exists, let alone the impact it has on those living with it. Despite it being more common than Huntington’s Disease, Cystic Fibrosis and Muscular Dystrophy combined, many healthcare professionals have never heard of the condition.

Neurofibromatosis Type 1, Type 2, Schwannomatosis. People living with neurofibromatosis can develop tumors along their nervous system which can be itchy, painful, and can cause medical complications. Not all tumors are visible. Neurofibromatosis often comes with an assortment of comorbid conditions such as scoliosis, autism, visual impairments or audio impairments. Neurofibromatosis is genetically dominant, which means it can be passed on to your children. If you have been diagnosed with NF there is a 50% chance that your child will be born with NF.

Locally, on May 17, 2018, an interview of NF First board members conducted by Aaron Rhody of WQWO 18 News (Eau Claire) was broadcast. The discussion centered around the groups upcoming first annual walk, Kickin It in the Park for NF on May 19, 2018 at Irvine Park and the forming of the local foundation, which was a dream of Myshell Reith who lost her life to NF in September 2016.

Although May 17th is set aside as a World Day to raise awareness, the entire month of May is NF Awareness month. Awareness is a need focused on daily by those afflicted and their families.

Shine a light on NF is a grass roots movement that began with the purpose of bringing awareness to as many communities as possible.

On May 17th, 2018 the following states lit up public buildings and bridges to celebrate World NF Day!