Whereas dozens of states approve proclamations each year, Governor John Kasich signed first law in the country recognizing awareness of genetic disorder
Hundreds of Landmarks Worldwide to ‘Shine a Light on NF’
'I Know a Fighter’ Movement Brings Attention to Brave Heroes Battling Disease
NEW YORK – February 1, 2018 – Neurofibromatosis, also known as NF, is a genetic disorder few have heard of, but the Children’s Tumor Foundation is working to change that with the expansion of its #EndNF campaign.
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.
Research funded by the Children’s Tumor Foundation (CTF) and led by Ludwine Messiaen, PhD, professor of genetics at the University of Alabama at Birmingham (UAB), has shown that missense mutations in a cluster of just five codons in the NF1 gene are an important risk factor for severe symptoms of the genetic disorder neurofibromatosis (NF) type 1, thereby improving the predictability of this condition when these specific mutations are present in an individual. This work was published today in the American Journal of Human Genetics.
Honorees include Freda Lewis-Hall of Pfizer, Lara S. Sullivan of SpringWorks Therapeutics, NF Ambassadors Frankie and Olyviah Moriguchi, and a special tribute to the NF Patient
With Master of Ceremonies Raina Seitel, NBC Host & Correspondent
NEW YORK – On Thursday, November 9, 2017, prominent New York business leaders, together with friends, families and fundraisers, will gather at The Lighthouse on Pier 61 for the annual Children’s Tumor Foundation New York Gala, which this year will “Shine a Light on NF.” Funds raised will support research into neurofibromatosis (NF), a genetic disorder that causes tumors to grow on nerves throughout the body and affects 1 in 3,000 births of all populations. There is currently no cure.