Skip to main content

Neurofibromatosis Report from the 2010 Child Neurology Society Meeting

By October 19, 2010December 5th, 2023Awareness, Newsletter

Report by Kathleen Berentsen, MS, MPH, CGC –  CTF Clinical Program Coordinator
Last week approximately 600 healthcare providers were in attendance at the 39th national meeting of the Child Neurology Society in Providence, Rhode Island.  Children’s Tumor Foundation’s Kathleen Berentsen staffed the CTF exhibit booth. Kathleen had an opportunity to meet several child neurologists who also care for those affected by neurofibromatosis and the chance to highlight the brochures offered by the Foundation for families.  Several of the NFCN physicians stopped by including Dr. David Rothner and Dr. Manikum Moodley from Cleveland Clinic; Dr. Nicole Ullrich from Boston Children’s Hospital, Dr. Amy Goldstein from University of Pittsburgh, Dr. Roger Packer from Children’s National Medical Center and Dr. Kaleb Yohay from New York Presbyterian-Weill Cornell Medical Center (pictured here).   Finally, Dr. David Mandelbaum from Rhode Island Hospital entertained Kathleen with a booklet for patients he wrote entitled “Red spots, White spots, Brown spots, Blue spots; How your Doc will connect those dots”.  In this booklet he discusses, in a rather humorous way inspired by Dr. Seuss, the importance of a thorough skin exam during a neurology evaluation.  While not a booklet written to NF per se, a very helpful resource for some about spots and why they are important for a physician to know about.Neurofibromatosis was highlighted in several platforms.  To begin, leading physicians in the field of NF clinical research provided a breakfast seminar “New Therapeutics for Children and Young Adults with Neurofibromatosis type 1 and 2”.  A very well attended session, Dr. Roger Packer presented his experience in the current treatment approach to optic pathway gliomas.  Dr. Maria Acosta followed shortly thereafter presenting her experience in the lovastatin studies in the realm of learning disabilities; she also had a poster for presentation on this topic.  Finally, Dr. Brigitte Widemann presented her experience in the role of managing plexiform neurofibromas.  All presenters reviewed their ongoing research.  Dr. David Rothner from Cleveland Clinic also presented a poster discussing headaches in children and adolescents with neurofibromatosis type 1.   Further information regarding open clinical trials for neurofibromatosis can be found by simply typing in the search term “neurofibromatosis”