Newswise — New York City-based research and patient care for Neurofibromatosis (NF), a common but often unrecognized genetic disorder, is getting a boost this week when the Children's Tumor Foundation (CTF http://www.ctf.org ) makes its first gift to NYU Langone Medical Center (NYUMC http://www.nyumc.org ).
"This is one of ten identical gifts the Children's Tumor Foundation is giving to support ten NF clinics throughout the country specifically to support an NF clinic coordinator at institutions leading the way in NF clinical care," said Kim Hunter-Schaedle, Ph.D., Chief Scientific Officer of CTF. "NYU Langone Medical Center is clearly at the forefront not only of NF clinical care but also NF research, and identifying future clinical therapies for NF."
Neurofibromatosis is the term for three related but distinct genetic disorders: NF1, NF2, and Schwannomatosis. NF1 is the most common form and one of the most common of all genetic disorders affecting one in every 3,000 births. NF1 can cause tumors anywhere in the nervous system and on the skin, as well as bone and cardiovascular defects. NF2, which occurs in one of every 25,000 births, causes brain and spinal tumors, typically resulting in hearing loss and eventual deafness. The hallmark of Schwannomatosis is severe, chronic pain that can be very debilitating
The NF program at NYUMC, led by Drs. Jeffrey Allen and J. Thomas Roland, is a hallmark of its kind. It will facilitate coordinated care and research with a multidisciplinary team representing a wide range of surgical and medical specialists. Dr. Allen, a pediatric neurologist specializing in neuro-oncology, is spearheading the NF1 part of the clinic. Young NF1 patients may develop tumors of their visual pathway and peripheral nerves and often suffer from behavior and learning disabilities
Dr. Roland, who treats NF2 patients, said he came into this specialty first through an interest in hearing loss. When he realized that those affected by NF2—the disorder typically strikes those in their mid-teens to early twenties—were missing many opportunities because they received disjointed care, he began an initiative with colleagues to bring a comprehensive approach to patient care. "This clinic will bring compassionate expertise to our NF1 and NF2 patients at our Medical Center, and we are especially grateful to the Children's Tumor Foundation for their support;" said Dr. Roland. "Their leadership in helping establish a network of NF clinics is a huge step in our fight against this genetic disorder."
Jackie Murphy, an NF2 patient under Dr. Roland's care, noted, "I am pleased that NYU Langone Medical Center has become an affiliate clinic of the Children's Tumor Foundation clinic network. I have received excellent medical care from my surgeons at NYU—they are prominent, experienced and knowledgeable NF2 surgeons, who understand the needs of NF2 patients, and the challenges we face. Top-notch medical and surgical care coupled with research funded by the Children's Tumor Foundation can improve the prognosis for NF patients."
Ms. Hunter-Schaedle added, "The NF Clinic Network is part of a key effort to create a shared NF patient database, a prerequisite to improved patient care and the development of more effective treatments and drugs,"
NF can affect very young children and it typically progresses with age. It can arise in any family, regardless of race or ethnic origin and approximately half of all cases occur in families with no history of the disorder. Over 100,000 people live with NF in the U.S. alone with millions more around the globe.
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