Celebrating 35 Years

Scheduled Presentations

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
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