This Mom is Helping Organize a Fundraiser for Neurofibromatosis in South Dakota

According to a story from, Westin Cuka, age six, was first diagnosed with neurofibromatosis, a rare disorder, three years ago. Since then, the family has traveled on multiple occasions to participate in fundraising events that contributed to research related to the illness. But Westin’s mom Naomi has recently started to collaborate with the Children’s Tumor Foundation to organize a Walk for NF in South Dakota, their home state.

About Neurofibromatosis

Neurofibromatosis is a genetic disorder that has an impact on a number of the human body’s functional systems. It is caused by a mutation of a gene located on chromosome 17 which is responsible for the production of the protein neurofibromin. This mutation can be heritable, but about half of cases are the result of spontaneous mutation. Symptoms include epilepsy, tumors affecting the nervous system and skin, spots on the skin, scoliosis and other skeletal deformations, learning and mental impairment, and vision disorders. People with the disorder also have greater risk of cardiovascular disease and cancer compared to unaffected people. The severity of symptoms can vary greatly; some people live fairly typical lives, whereas others are faced with serious quality of life challenges. There is no cure, and treatment generally involves managing serious symptoms and complications as they appear. To learn more about neurofibromatosis, click here.

Thankfully Westin hasn’t developed any tumors so far, but he does have curves in his spine and he has dealt with delays to his speech and walking.

While the event was initially scheduled for June, the COVID-19 pandemic threw a wrench into those plans. Now the event will be held virtually on October 3rd. In the virtual format, everyone that participates will conduct a walk in an area of their choosing:

“We are going to get on the morning of October 3rd and do a little spiel and then we encourage everyone to go out even if it’s just around their house, or down to a local park, or on a bike path, something like that. Take pictures and then everybody who submits a picture in we’re going to make an awesome video and pay tribute this way.” – Naomi Cuka

Are you interested in getting involved in the event? Click here to sign up.

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