Topics are NOT IN ORDER of the actual schedule and may be subject to change. There will also be opportunities that aren’t listed here for meeting and talking with others.
- NEW NF1, NF2 AND SCHWANNOMATOSIS DIAGNOSTIC CRITERIA – not confirmed!
- REGIONAL CLINIC INFO AND TRIALS UPDATES
- ENCOURAGING SOCIAL CONNECTIONS AND ADAPTIVE BEHAVIORS. HOW PARENTS CAN HELP! Sandra Cushner-Weinstein LICSW, director of Brainy Camps and Camp New Friends, and a social worker from the Children’s National Medical Center in Washington, DC
- GENE THERAPY/GENE EDITING – Robert Kesterson, PhD, University of Alabama, Department of Genetics
- NF1 TOPIC: CUTANEOUS NEUROFIBROMAS
- Cutaneous Neurofibromas Overview and Natural History – Presenter TBA
- Surgical Management of Cutaneous Neurofibroma: Current Therapy and Future Directions – Lu Le, MD PhD, University of Texas Southwestern Medical Center
- Drug Treatment of Cutaneous Neurofibromas: Past, Present, and Future – Ashley Cannon, MS, CGC, PhD, University of Alabama
- Translational Research Update on Cutaneous Neurofibromas – Matt Steensma, MD, Spectrum Health, Francis S Collins Scholar
- Research Update: Photodynamic Therapy on Cutaneous Neurofibromas—Medical College of Wisconsin
- NF1 TOPIC: OPTIC GLIOMAS/RESEARCH AND TREATMENT UPDATE – Robert Listernick, MD, Lurie Children’s Hospital and NF Clinic, Chicago, IL
- NF 2 TOPIC: HEARING REHABILITATION IN NF2 – Auditory Brainstem and Cochlear Implantation – Kevin Peng, MD, Otologist/Neurotologist, House Clinic. Los Angeles, CA
- NF 2 TOPIC: DISCOVERIES FROM SYNODOS FOR NF2 and Identification of Natural Compounds to Treat NF1 and NF2 Tumors – Long-Sheng Chang, PhD, Professor, Abigail Wexner Research Institute at Nationwide Children’s Hospital and The Ohio State University College of Medicine
- NF 2 TOPIC: NF2 BIOSOLUTIONS – Accelerating Gene Therapy Research for Neurofibromatosis Type 2 – John Manth, Board Member