The annual CTF NF Conference and Forum took place in Austin, Texas June 18-21, 2016. Over 250 researchers including many from England, Europe, and around the world attended. Dr. David Viskochil, one of the researchers who helped identify the NF1 gene, received the Freidrich von Recklinghausen Award. Dr. Viskochil, who is a researcher and clinician at the University of Utah, is an active member of the CTF national organization and is also active in the CTF NF Camp for teens and young adults with NF that takes place every July in Salt Lake City, Utah.
Among the many excellent presentations of research and clinical topics related to NF, some of the most notable were efforts to develop guidelines for monitoring of adult NF1 patients. Guidelines laying out the frequency of visits and types of monitoring for children with NF1 were formulated many years ago and have been very valuable. Unfortunately, there are not similar best practice guidelines for adults, and this is widely viewed as a big need. These guidelines will include monitoring for tumors and cancer, blood pressure and heart issues, hormone problems and more.
Other topics that were highlighted included the transition of plexiform neurofibromas to malignant peripheral nerve sheath tumors (MPNSTs), studies on optic gliomas, new medications undergoing clinical trials for tumors in NF1, NF2, and schwannomatosis, and investigations on the psychological and social aspects of NF1.
CTF provides invaluable support for high quality research for patients with NF, and the annual meeting is the premier event in NF research. CTF also fosters collaboration among researchers across the spectrum from laboratory science to everyday patient care.
The NF Forum took place concurrently with the scientific meeting and provided a great opportunity for patients to learn from specialists and from each other. Mrs. Pennie Brooks, whose daughter was born with NF, is the Tennessee representative to the CTF Volunteer Leadership Council and attended the CTF Forum in Austin. (Look for more information about her experience in the Q&A section on page 5.) Overall, the Forum is an inclusive, educational, and social atmosphere.
The 2017 CTF NF Conference will be held in Washington, D.C., June 10-13. Online registration will begin soon on the CTF website (www.ctf.org).