Listen to leading experts in NF talk about where we are today and where we're headed in the pursuit of treatments and a cure for NF.
THE CHILDREN'S TUMOR FOUNDATION: AN INTRODUCTION John Risner, CTF President Mr. Risner provides a history of the Children's Tumor Foundation, an overview of its mission, and an introduction to the Foundation's research programs and initiatives.
HOW IS CTF ACCELERATING NF RESEARCH PROGRESS TO THE CLINIC? Dr. Kim Hunter-Schaedle, CTF Chief Scientific Officer Dr. Hunter-Schaedle provides an overview of the current NF research landscape: what NF research has accomplished to date, where is it today, and who funds this research. Dr. Hunter-Schaedle then reviews CTF's current research grant programs and initiative and how these are targeted at accelerating NF research progress toward the identification of effective drug therapies.
DIAGNOSIS AND GENETICS OF NF and NF1: PLEXIFORM NEUROFIBROMAS Dr. Bruce Korf, University of Alabama Dr. Korf provides a comprehensive overview of the three forms of NF: NF1, NF2, and schwannomatosis and the manifestations that might affect individuals with these forms of NF during their lifetime. Dr. Korf defines a genetic disorder, explains how NF is typically diagnosed, and defines the role of a genetic diagnosis versus diagnosis based on a clinical exam. Dr. Korf discusses when a patient might consider genetic testing including IVF. Dr. Korf discusses concerns that need to be addressed when an individual with NF becomes pregnant. Dr. Korf provides an overview of plexiform neurofibromas, how these are managed, the concerns these cause for the patient and emerging treatments for these tumors. Finally Dr. Korf discusses the goals and significance of the Children's Tumor Foundation NF Clinic Network to improve NF clinical care.
NF1: LEARNING DISABILITIES AND BEHAVIORAL ISSUES Dr. James Tonsgard, University of Chicago Dr. Tonsgard discusses the spectrum and diagnosis of learning disabilities and cognitive issues that can be associated with NF1. Dr. Tonsgard discusses how parents of children with these disabilities can help their child cope; what parents can tell teachers and school personnel about their child's NF1; and recommends resources and plans of action for those affected by NF1 learning disabilities. Dr. Tonsgard reviews the most important improvements in NF clinical care that he has seen over the course of his career as well as the main areas that need improvement. Finally, Dr. Tonsgard reviews current and emerging treatments for NF1 learning disabilities.
NF1: DERMAL NEUROFIBROMAS Dr. Hubert Weinberg, Mount Sinai School of Medicine, New York Dr. Weinberg discusses the impact that dermal neurofibromas can have on the lives of an individual with NF1 and the challenges they present for both patient and physician. Dr. Weinberg discusses the clinical management of these tumors, including new electrodessication approaches that have been pioneered and proved to be successful on his clinic.
NF1: BONE ABNORMALITIES Dr. David Viskochil, University of Utah Dr. Viskochil reviews the various types of bone abnormalities that can affect individuals with NF1 and how these arise. Dr. Viskochil reviews current care and management of these disorders and the new drug therapies and clinical care approaches that are on the horizon. Finally Dr. Viskochil discusses the goals of the US Army funded NF Phase II Clinical Trials Consortium in which his NF clinic participates.
NF2 OVERVIEW Dr. Tom Roland, New York University, New York Dr. Roland reviews diagnosis of NF2, the progression and prognosis of a typical NF2 patient, current clinical management approaches for this disorder, and the specific concerns that affect NF2 patients.
NF2 AND SCHWANNOMATOSIS: OVERVIEW AND FUTURE THERAPIES Dr. Scott Plotkin, Massachusetts General Hospital/Harvard Medical School Dr. Plotkin reviews the key features of NF2, and how both its diagnosis and progression differ radically from NF1. Dr. Plotkin reviews emerging candidate drug treatments for NF2 highlighting the efforts of the Children's Tumor Foundation to drive NF2 clinical trials forward.
Dr. Plotkin then reviews the key features of schwannomatosis and how this varies from NF2. He reviews the recent identification of a candidate gene for schwannomatosis and the promise this offers for a better understanding and more thorough diagnosis of the disorder, as well as for the future development of drug therapies for schwannomatosis.
NF ASSOCIATED PAIN Dr. John Slopis, MD Anderson Cancer Center, Houston, TX Dr. Slopis discusses tumor-related pain in NF and why this occurs. Dr. Slopis reviews the options available for the management of pain in NF and what has been observed as being successful.
Disclaimer: This information is for general informational purposes only. It is not intended to be a substitute for medical advice, diagnosis or treatment by a physician who is aware of your medical history and has had an opportunity to examine you. Do not rely on this information in place of seeking professional medical advice.
