Advisory Boards

2013-2015 Scientific Advisory Board

  • Bruce Gelb, MD, Icahn School of Medicine at Mount Sinai, NY; PI for the 2011 RASopathies symposium
  • Karen Gripp, MD, Nemours/A.I. duPont Hospital for Children
  • Bruce Korf, MD, PhD, University of Alabama; PI for the 2013 RASopathies symposium
  • Katherine A. Rauen, MD, PhD, University of California, Davis – 2017 RASopathies Symposium Co-Chair
  • Amy Roberts, MD, Boston Children’s Hospital/Harvard Medical School
  • Alcino Silva, PhD, University of California, Los Angeles
  • David Stevenson, Stanford University

Technical Advisors

  • Luba Djurdinovic, MS, Executive Director, Ferre Institute, and Genetic Counselor
  • Bob Frangenberg, Director, Los Angeles County Children’s Medical Services, Retired
  • Barbara Wheeler, PhD, RN, University of Southern California, University Center of Excellence in Developmental Disabilities

Advocates’ Advisory Board

CFC syndrome: Les Rogers, CFC International; Kyle Stowell, CFC International

Costello syndrome: Colin Stone, International Costello Syndrome Support Group; Tammy Moore, Costello Syndrome Family Network

Neurofibromatosis type 1: Annette Bakker, PhD, CTF; Kim Bischoff, NF Network

Noonan syndrome: Ann Yureck, Noonan Syndrome Foundation; Michelle Ellis, Noonan UK; Tammy Bowers, NSML/LEOPARD syndrome Advocate

 

Advocates’ Registry Advisory Committee

  • CFC syndrome: Pilar Magoulas
  • Costello syndrome: Matt Stevenson, Colin Stone
  • NF-1: Debbie Bell
  • Noonan syndrome: Jeffrey Jasper