Shari Krantz, IWSA Executive Director

Shari became the IWSA's first paid staff in 2017 as the organization's part-time Executive Director.  In this role, Shari leads the IWSA's day-to-day activites and coordinates programs and initiatives executed by volunteers around the world.  She has served the IWSA since 2006 when her daughter Amy Marshall (1995-2015) was diagnosed with WAGR syndrome.  Shari has worked with the IWSA in a number of roles including as a volunteer, board member, and Board Chairperson and Co-Chair.  Shari's family hosted three WAGR Weekends in Maryland.  Meeting and supporting IWSA families around the world and furthering Wilms tumor research are among her passions related to WAGR syndrome.

Email: shari.krantz@wagr.org

Jenny Gunckle, IWSA Board Member

Jenny Gunckle joined the IWSA Board of Directors in 2017.  As an actuary with a professional background in statistics, she has a passion for furthering research specific to WAGR syndrome and for encouraging participation in the WAGR Syndrome Patient Registry.  

Jenny lives in Michigan with her husband Adam, and children Evan and Emma (WAGR syndrome).  After Emma was treated for Wilms tumor, Jenny and her family also founded the nonprofit family foundation, WAGR Warriors.

Email: jenny.gunckle@wagr.org

Kelly Trout, IWSA Board Chairperson, IWSA Director of Research & Medical Advocacy 

Kelly Trout, BSN, RN is a registered nurse. She is the Director of Research and Medical Advocacy for the IWSA, and is Program Manager of the IWSA WAGR Syndrome Patient Registry. She has served as a Merit Reviewer for PCORI, the Patient Centered-Outcomes Research Institute, was the Principal Investigator for the PCORI 2018 Conference on Wilms Tumor in WAGR Syndrome, and is currently serving as a PCORI Ambassador. Kelly is a member of the Global Genes RARE Foundation Alliance Leadership Council. She is the author of numerous articles on WAGR syndrome, and has presented at national and international conferences on WAGR syndrome and rare disorders. Kelly lives with her family in San Antonio, Texas. Her daughter Caroline has WAGR syndrome.

Email: kelly.trout@wagr.org

Natella Sukhanova, MD, Researcher, Department of the Orphan Diseases, Head of the Aniridian Center at the Research Institute of Pediatrics in Central Clinical Hospital of the Russian Academy of Sciences

Dr. Natella Sukhanova is a research and clinical ophthalmologist. She is the Head of the Center for Aniridia Research Institute of Pediatrics and Children's Health, at the Central Clinical Hospital of the Russian Academy of Sciences in Moscow. Dr Sukhanova's presentation is about the services provided at the Center for Aniridia Research, which includes patients with WAGR syndrome. The Center is a model of medical care management for individuals with these complex disorders.

Peter Netland, MD, PhD, Ophthalmologist, University of Virginia, Charlottesville

Peter Netland, MD, PhD, is professor and chairman of the Department of Ophthalmology.  He is an active clinician caring for glaucoma patients and is a recognized expert in the clinical management and surgical treatment of glaucoma.  Dr Netland has authored more than 300 scientific articles, book chapters, reviews, and abstracts.