Petersen raises money for genetic disorder

Local families will gather at the Grandview Rose Garden Lower Yakima Valley Pathway on Sept. 16 to run in support of patients living with neurofibromatosis or NF. 

Chloe Petersen of Grandview was inspired to organize the Valley Moves 5K and 10K Family Run in honor of her 6-year-old cousin, Eliana Stewart, and a local sixth grader, Shannon Brock, both of whom have NF. 

NF is a genetic disorder that causes tumors to grow on nerves throughout the body and affects one in every 3,000 people. Currently there is no cure or effective treatment for NF.

Money raised will be donated to the Children’s Tumor Foundation, a nonprofit whose mission is to end neurofibromatosis through research. 

Petersen, 15, began organizing this family friendly charity race in 2014 when she was only 11. Chloe wanted to do something to spread awareness for local charities and causes close to her heart. 

This year, she chose to dedicate the proceeds to the Children’s Tumor Foundation.

When asked what she finds to be rewarding about organizing a charity 5K, Petersen said, “The most rewarding part would have to be hearing people’s stories; knowing that every charity I raise funds for is making an enormous difference in people’s lives.”

Neither Shannon nor Eliana, the inspirations behind this decision, have a family history of NF, yet both were born with a genetic mutation of the disorder. This accounts for 50 percent of all cases.

Both girls have required regular follow-ups by multiple specialists at Seattle Children’s Hospital’s NF clinic due to the wide range of possible manifestations of NF.

Petersen’s advice to other teenagers who want to organize an event for charity is to remember that you don’t have to do it on your own.

“I definitely could not have done this without help,” she said.

The Children’s Tumor Foundation is the leading non-profit organization dedicated to finding effective treatments for the millions of people worldwide living with NF, a term for three distinct disorders: NF1, NF2, and schwannomatosis. 

NF causes tumors to grow on nerves throughout the body and may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain and cancer. Neurofibromatosis affects 1 in every 3,000 births across all populations equally. There is no cure yet, but the foundation’s mission of driving research, expanding knowledge and advancing care for the NF community fosters a vision of one day ending NF.  

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