Neighbor News
Local mom on a mission to raise awareness of rare genetic condition
She takes action by hosting the long-standing #NFStrong 5K
After her eldest son, Kyle, received the diagnosis of neurofibromatosis type 1 (NF1) during his preschool years, Jenn Krawchyk took proactive steps to educate herself and raise awareness of this rare genetic condition. NF1 is a genetic disorder that leads to the growth of tumors along nerves throughout the body. Kyle’s spontaneous mutation makes him the only one in the family with NF. Given the lack of awareness about NF1, Jenn was determined to advocate within her son’s school system to ensure he could receive the necessary support and accommodations for his success. She also aimed to use her experiences to assist others facing similar challenges. When Kyle was diagnosed at just 6 months old, Jenn felt isolated without anyone to turn to for guidance on NF or what to expect. They relied on their own research and the advice of pediatricians to navigate the condition.
Armed with knowledge, Jenn initiated the long-standing #NFStrong 5K event in northeast Ohio to share her knowledge and support with her community. Over the last 11 years, the NF community has blossomed, thanks to Jenn’s compassionate efforts. “We are grateful for the unwavering support of our family, friends, the NF Network, and everyone striving to find a cure for NF on behalf of all families and fighters affected. We are especially thankful for ALL of Kyle’s NF Warriors and their incredible support for our boy!”
Join Jenn, Kyle and other NF families June 29 at Boardman Park to support https://runsignup.com/Race/MO/NorthKansasCity/NFStrongMO
