This site was built solely for a collaborative online iNFo Fair during COVID. It remains open for a short period for viewing of recordings.
For NF MIDWEST'S 2023 iNFo Fair go to www.nfmidwest.org/info-fair.
See links below for Info Fair session recordings, or click here for full iNFo Fair playlist on YouTube.
NF1: children's issues & concerns
Bonnie Klein-Tasman, PhD from the University of Wisconsin discussed challenges of learning and attention some children with NF1 have and provide ideas for support.
Dr. Donald Basel from the NF Clinic at Children's Wisconsin discussed other medical issues or physical concerns that may be related to NF1 in children.
New theories on underlying problems that lead to hearing loss
Current treatment options to preserve hearing
Ongoing trials, including those using bevacizumab
Cochlear and auditory brainstem implants
Presented By Justin Jordan, MD, MPH
Using Bacteria to Kill the NF2 Gene
Presented by Gary Brenner, MD, PhD and Dr. Mekalanos
NF2 Parent Panel
Moderated by John Manth
Includes Laura Didier, Susan Buono, Adam Rosenberg,
and Linda Manth
Dr. Steven Rhodes from the Indiana University School of Medicine gives an overview of the various types of tumors that can arise within the skin and throughout the body in NF1.
Dr. Amy Armstrong from the NF Center at Washington University School of Medicine in St. Louis discussed current treatments and trials for plexiform neurofibromas.
Dr. AeRang Kim from Children's National Medical Center discusses current treatments and trials for MPNSTs.
Dr. Lu Le from the University of Texas Southwestern Medical Center discusses surgical interventions for the removal of cutaneous neurofibromas, other medical therapies, and trials.
Research Update: Genetics of Cutaneous Neurofibromas
Dr. Kavita Sarin and Ekshika Patel (Stanford University) and Dr. Carlos Romo (Johns Hopkins University) discuss their ongoing work to identify genetic modifiers of cutaneous neurofibroma development.
Presented by Carlos Romo, MD and Anna Piotrowski, MD
Carlos Romo, MD and Anna Piotrowski, MD, present other considerations that were not discussed previously in the day that pertain especially to adults with NF1. For instance, high blood pressure, pheochromocytomas, GISTs, depression, and more.
Dr. Virginia Harrod, Co-Chief of Pediatric Neuro- Oncology, Dell Children’s Medical Center, Austin, TX presented on the types of brain tumors and their management in NF1.