The Children’s Tumor Foundation 'I Know a Fighter’ Initiative Brings Attention to Brave Heroes Battling Rare Genetic Disorder
NEW YORK – May 1, 2018 – Neurofibromatosis, or NF, is a genetic disorder that few have heard of, yet it affects over 125,000 Americans and over 2.5 million people worldwide. The Children’s Tumor Foundation is working to change that through a month-long campaign drawing attention to the inspirational and remarkable stories of those living with NF, and the critical need for research to better their lives.
The following interview was conducted on November 13, 2017 with Jim Hubbard, a school psychologist and counselor, by Kate Kelts, RN, BSN, patient support coordinator for the Children’s Tumor Foundation. Jim has 33 years of experience as a school psychologist working with children and families, as well as living with NF1 himself. This resource is meant to serve as a resource for parents beginning the process of advocating for their child’s education.
Whereas dozens of states approve proclamations each year, Governor John Kasich signed first law in the country recognizing awareness of genetic disorder
It’s cold outside! These chilly winter days are a great time to reflect upon a number of the NF Walks that took place during the warmer autumn months of August and September. Thanks to all of the participants, volunteers, organizers, and donors who made these events, and all the 2017 NF Walks, so impactful!
NEW YORK, NY – January 17, 2018 – The temperatures outside may still be in the single digits, but the Children’s Tumor Foundation is looking forward to warmer days ahead, with the announcement of an exciting new 5K race tour called the “I Know a Fighter 5K” to raise awareness and funds for the genetic disorder neurofibromatosis, or NF, which causes tumors to grow on nerves throughout the body. The I Know a Fighter 5Ks will take place in 10 cities across the United States starting this spring.