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It’s Here! Previewing the 2011 Neurofibromatosis Conference

By June 6, 2011December 5th, 2023Awareness, NF Conference

Ed Note: The following is a preview of the 2011 NF Conference written by CTF Cheif Scientific Officer Kim Hunter-Schaedle.  The Conference is limited to the scientific and clinical community but the Foundation will be providing interactive updates for the lay community throughout the week.  If you have questions about NF (NF1, NF2, or schwannomatosis), management, clinical trials, or any of the manifestations email them to and we’ll interview the experts and present the answers via video throughout the week.

In just over a week, the Children’s Tumor Foundation will convene around 350 neurofibromatosis researchers and clinicians for the 2011 Neurofibromatosis Conference. Organized by CTF for over 20 years, the NF Conference is the world’s premier gathering for sharing scientific and clinical updates on NF1, NF2 and schwannomatosis. The Conference has grown significantly in recent years – almost tripling in size since 2005 – an indication of the significant progress that has been made in NF research over that timeframe. In particular we have seen a significantly increased number of clinicians attending in the past few years, as basic research shows promise and drug discoveries transition into clinical trials.

The 2011 NF Conference will be held in Jackson Hole, Wyoming June 11th – 14th. This location marks a return to a mountain setting. Until 2006 the Conference was held annually in Aspen, CO; since then we have hosted it in a range of venues from Portland, OR, and Baltimore, MD.

The 2011 NF Conference is chaired by two leaders of the NF community: Nancy Ratner(Cincinnati Children’s Hospital Medical Center) and Dr. Michel Kalamarides(Universite Paris 7). The agenda features a balanced mix of basic science, clinical care and clinical trials, with good representation from NF1, NF2 and schwannomatosis.  Here are some of the highlights we look forward to.


New understanding of early development will lead the way to treatments: NF1 sessions at the 2011 NF Conference run the gamut from studying the earliest developmental events in tumors, to clinical trials.  Updates on NF1 clinical trials and management will be shared in a session co-chaired by Ludwine Messiaen (University of Alabama) and Dusica Babovic-Vuksanovic (Mayo Clinic) which will include updates on the Imatinib (Gleevec) plexiform neurofibroma trial at University of Indiana (Kent Robertson)and the use of vitamin D3 for treatment of NF1 bone density (Kimberly Jett, University of Alberta).

In the arena of clinical care, Anat Stemmer-Rachamimov (Harvard/MGH) will moderate a panel discussion focused on gliomas in NF1, covering optic pathway gliomas and other brain tumors which are rare but potentially very dangerous manifestations of NF1 particularly seen in children. Vijaya Ramesh (Harvard/MGH) will chair a session on NF1 peripheral nerve neurogenesis which looks at the emerging area of understanding how very early events in embryonic development might predict future sites of tumor growth in NF1.

Peggy Wallace (University of Florida) and Meena Upadhyaya (University of Cardiff, United Kingdom) will co-chair a session on emerging targets in NF1 which will look at some of the up-and-coming drug targeting approaches that may soon find their way to the clinic.  An area of emerging interest in NF1 is the study of vasculopathy, as evidence accumulates that those with NF1 may be at greater risk of cardiac events than the general population.  David Ingram (Indiana University)has been one of the pioneers in this area and will provide an update of his findings from both mice and humans.

Immediately prior to the 2011 NF Conference CTF is hosting a Learning Disabilities Workshop co-chaired by Dr. Maria Acosta (Children’s National Medical Center) and Dr. Alcino Silva (UCLA). The understanding and treatment of NF1 learning disabilities has made significant progress in the last few years with Lovastatin now in Phase II trials. However much remains unknown.  This workshop will bring together thinking from those who study NF1 learning disabilities as well as from other areas such as autism and fragile X. The goal of the workshop is both to provide updates on the status of understanding and treating NF1 learning disabilities, and to see how cross-pollination of knowledge and collaboration across different conditions might drive progress.


As clinical trials and clinical care advance, the search for new drug targets continues: It is only a few years since NF2 clinical trials commenced, and the NF Conference includes updates from a few of these, including bevacizumab (Avastin) for the treatment of meningiomas (Fabio Nunes, Harvard/MGH) and Lapatinib for treatment of vestibular schwannomas (a Children’s Tumor Foundation-funded study by Dr. Jaishri Blakeley, Johns Hopkins). A panel discussion moderated by Michel Kalamarides will focus on best options for hearing preservation in NF2, a key issue given the different opinions on radiation therapy and the emergence of candidate drug therapies.   One session of the NF Conference, chaired by Filippo Giancotti (Memorial Sloan-Kettering Cancer Center) and Helen Morrison, PhD (Leibniz Institute for Age Research, Germany) will examine the development and use of genetically-engineered mouse models to understand and test drug therapies for NF2.  Meanwhile, the search for new NF2 drug targets continues. In 2010, one of the most heavily discussed issues of the NF Conference was new evidence that the NF2 gene protein merlin could act both outside and inside the cell nucleus. This has opened up new thinking and discussion on how drugs should target NF2 tumors, and a session of the 2011 Conference chaired by DJ Pan (Johns Hopkins University) will examine this.


An International Database and a forthcoming Workshop: In 2009 CTF funded the development of an International Schwannomatosis Database. Given the very modest number of persons with schwannomatosis seen at any one clinic, the Database is intended to provide a means for any clinic worldwide to enter information on their schwannomatosis patients.  This will become a valuable resource for future clinical research and clinical trials. Spearheaded and managed by Allan Belzberg at Johns Hopkins University, the Database is now ‘live’ at Amanda Bergner(Johns Hopkins University) will provide an update on the project.  Additional schwannomatosis presentations will focus on the impact of tumor burden on quality of life (Vanessa Merker, Harvard/MGH), emotional distress in adults with schwannomatosis (Daphne Wang, Harvard/MGH), and whether pain in NF1 has parallels with pain in schwannomatosis(Maria Acosta).  CTF is hosting a Schwannomatosis Workshop in Los Angeles at the end of June, and we look forward to reporting further updates in the field from that meeting.

Lay Presentations
A Heartfelt Inspiration: A regular feature of the NF Conference for the past five years has been the presentations made by three lay individuals whose lives are affected by NF1, NF2 or schwannomatosis. This year we are delighted to have Sheila Heal, President of AdvoCure NF2, speaking about her family’s experience with NF2; Jill Beck, CTF staff member speaking about her family’s experience with schwannomatosis; and Jackson Hole local Benjamin Ellis, talking about his family’s experience with NF1. These presentations are so very inspiring especially for the scientist attending, who do not interface with patients and families day to day.  We are ever grateful to the families that give their time and honesty to this treasured part of the NF Conference.