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NOVEMBER 13th
SATURDAY INFOFAIR 2021
10 AM - 5 PM EST | 9 AM - 4 PM CST
UPDATES
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There will be no content related to Schwannomatosis as we are planning a separate event for it in early 2022.
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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
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10:30 - 11:00 AM EST
9:30 - 10:00 AM CST
Advocacy for Federal Funding
Speaker: Gillian Payne, The Littlest Tumor Foundation​
NF2 SESSIONS
NF2: Hearing Restoration
11:00 - 12:00 PM EST
10:00 - 11:00 AM CST
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New theories on underlying problems that lead to hearing loss
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Current treatment options to preserve hearing
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Ongoing trials, including those using bevacizumab
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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
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2:00 - 3:00 PM EST
1:00 - 2:00 PM CST
NF2 Parent Panel
Moderated by John Manth
Includes Laura Didier, Susan Buono, Adam Rosenberg,
and Linda Manth
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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
Session Overview
​​Dr. Steven Rhodes from the Indiana University School of Medicine will give 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 will discuss current treatments and trials for plexiform neurofibromas.
Malignant Peripheral Nerve Sheath Tumors (MPNSTs)
Dr. AeRang Kim from Children's National Medical Center will discuss current treatments and trials for MPNSTs.
Cutaneous Neurofibromas (Skin Tumors)
Dr. Lu Le from the University of Texas Southwestern Medical Center will discuss 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) will briefly discuss their ongoing work to identify genetic modifiers of cutaneous neurofibroma development.​
NF1 SESSION: The Brain
Presented by Virginia Harrod, MD, PhD, and Manikum Moodley, MD, FRCP
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2:00 - 3:30 PM EST
1:00 - 2:30 PM CST
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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.
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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
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3:30 - 5:00 PM EST
2:30 - 4:00 PM CST
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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.
NF1: children's issues & concerns
Moderated by Bonnie Klein-Tasman, PhD
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3:30 - 5:00 PM EST
2:30 - 4:00 PM CST
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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.
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