See links below for Info Fair session recordings, or click here for full iNFo Fair playlist on YouTube.

NF1: children's issues & concerns

Learning and Attention in Children with NF1

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.

Other Medical Issues in Children with NF1

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.

 

NF2 recordings 

  • 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

Therapies in NF2

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

TOPICS IN NEUROFIBROMATOSIS

Understanding NF1 vs NF2 vs Schwannomatosis

Speaker: Miriam Bornhorst, MD

Advocacy for Federal Funding
Speaker: Gillian Payne, The Littlest Tumor Foundation

NF1 RECORDINGS

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.

Plexiform Neurofibromas

Dr. Amy Armstrong from the NF Center at Washington University School of Medicine in St. Louis discussed current treatments and trials for plexiform neurofibromas.

Malignant Peripheral Nerve Sheath Tumors (MPNSTs)

Dr. AeRang Kim from Children's National Medical Center discusses current treatments and trials for MPNSTs.

Cutaneous Neurofibromas (Skin Tumors)

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.

NF1: Other Complications & Concerns

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.

NF1 Brain Tumors

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.

 

UBOs, Moyamoya, and Other Non-tumor Issues of the Brain

Dr. Manikum Moodley, Pediatric Neurologist Dell Children’s Medical Center, Austin, TX presents on the Neurological aspects of NF1 including UBOs, Moyamoya, and seizures. He also discusses recommended types of imaging.