november 12th

friday night social

8 PM - 10 PM EST | 7 PM - 9 PM CST

 

NOVEMBER 13th

SATURDAY INFOFAIR 2021

10 AM - 5 PM EST | 9 AM - 4 PM CST

UPDATES

  • To attend the iNFo Fair use the link you received in an email after registering to get to the main "room" which follows the left side of this page. To attend the NF2 sessions and the NF1 Childrens Issues sessions use the Join Meeting links below.

  • There will be limited content related to Schwannomatosis as we are planning a separate event for it in early 2022.

  • EN ESPAÑOL: El Hospital de Niños de Los Ángeles está llevando a cabo un seminario web de educación virtual sobre neurofibromatosis tipo 1 para la comunidad de habla hispana el Domingo 14 de Noviembre.

info fair schedule - saturday november 13th

* schedule is approximate and topics are subject to change.

10:00 - 10:30 AM EST

9:00 - 9:30 AM CST

UNDERSTANDING NF1 VS NF2 VS SCHWANNOMATOSIS 

Speaker: Miriam Bornhorst, MD

10:30 - 11:00 AM EST

9:30 - 10:00 AM CST

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

NF2: Hearing Restoration 

Presented by Brad Welling, MD, PhD, FACS

11:00 - 12:00 PM EST

10:00 - 11:00 AM CST

  • 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

12:00 - 1:00 PM EST

11:00 - 12:00 PM CST

Using Bacteria to Kill the NF2 Gene

Presented by Gary Brenner, MD, PhD and Dr. Mekalanos

2:00 - 3:00 PM EST

1:00 - 2:00 PM CST

NF2 Parent Panel

3:00 - 4:00 PM EST

2:00 - 3:00 PM CST

NF1: neurofibromas + other tumors

Moderated by Steven Rhodes, MD, PhD

11:00 - 1:30 PM EST

10:00 - 12:30 PM CST

Moderated by John Manth

Includes Laura Didier, Susan Buono, Adam Rosenberg,

and Linda Manth

NF1 SESSION:  The Brain

Presented by Virginia Harrod, MD, PhD, and Manikum Moodley, MD, FRCP

2:00 - 3:30 PM EST

1:00 - 2:30 PM CST

NF1 Brain Tumors

Dr. Harrod, Co-Chief of Pediatric Neuro- Oncology, Dell Children’s Medical Center, Austin, TX will be presenting 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 will be presenting live on the Neurological aspects of NF1 including UBOs, Moyamoya, and seizures. He will also discuss recommended types of imaging.

NF1: other complications & concerns of adults

Presented by Carlos Romo, MD and Anna Piotrowski, MD

NF1: children's issues & concerns

Moderated by Bonnie Klein-Tasman, PhD

This will be a presentation and discussion of other complications and concerns that are not discussed previously in the day and pertain especially to adults with NF1. For instance, other medical concerns such as high blood pressure, pheochromocytomas, GISTs, depression, and more. There will also be a discussion on when and how to find appropriate care.

3:30 - 5:00 PM EST

2:30 - 4:00 PM CST

Learning and Attention in Children with NF1

Bonnie Klein-Tasman, PhD from the University of Wisconsin will discuss 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 will discuss other medical issues or physical concerns that may be related to NF1 in children.

3:30 - 5:00 PM EST

2:30 - 4:00 PM CST