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NF NEWS V ol u m e I I , 2013 T h e N e w s l e t t e r o f t h e C h i l d r e n ’ s Tu m o r F o u n d a t i o n Join the NF Registry And Help End NF In 2012, the Children’s Tumor Foundation created an online NF Registry. The purpose of this registry is to find people who may be eligible for clinical trials or other research studies being conducted in the field of neurofibromatosis (NF), and to determine the commonality of specific NF characteristics. This past April, the NF Registry proved useful in finding patients for a specific study. David Stevenson, MD, of the University of Utah, is enrolling patients who have had tibial bowing, but never a tibial fracture. Tibial bowing is a rare, but serious, complication of NF1 in which improper growth of the tibial bone of the lower leg leads to bowing and a tendency to fracture. In just a few clicks, the NF Registry created a list of 50 patients who fit the study requirements. These patients were then sent an email describing the study and giving contact information for Dr. Stevenson. Of those who received the email, about 35% opened it and a handful ! O R E H R E P U S BE A p y egistr e NF r help h t in jo n e ou ca Wipt and Y fregistr www.n ouF! N contacted the researcher. While a 35% response rate is fairly typical of what you can expect, it highlights why we need to increase the number of people in the NF Registry. Please visit for more information, or contact Pamela Knight, Children’s Tumor Foundation Clinical Program Manager, at 212-344-6633, ext. 8555. 2013 NF Forum is largest ever In Nashville, TN on April 19-21, over 300 people attended the 2013 NF Forum which brings together patients and families to learn about the latest medical advancements in NF research, receive practical advice on NF-related issues, and learn about resources provided by the Children’s Tumor Foundation. This year’s Forum was themed, “A Family Comes Together: Celebrating the NF Robert Sebastian entertains at the NF Forum Community” and it focused on the ways the Foundation is building relationships both in the world of research (amongst clinicians, researchers, and biotech) and within the population of those living with neurofibromatosis. Nashville is known as Music City, and attendees were treated to a unique opening reception on Friday evening as musician Robert Sebastian and his band kicked off the Forum with a rousing performance of songs new and old. Robert is an accomplished artist from Tennessee and has recorded several albums. He lives with NF2 and shared his experiences with the crowd, both through his music and with verbal interludes between songs. His notes were rockin’, his words were inspirational, and it was the perfect tone for the opening of this annual gathering. On Saturday morning, attendees were treated to a passionate opening keynote address by the current CTF Ambassador Drew Leathers. Drew is from Atlanta and was diagnosed with NF at age 11 and schwannomatosis in 2005. In 2009, Drew had surgery to remove a tumor that was obstructing his spinal cord and became a quadriplegic. Due to medical treatments and sheer tenacity, he has since regained function in his arms, and has become a bit of an continued on page 5

Children's Tumor Foundation Newsletter, Volume II 2013

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