Aniridia North America is governed by a Board of Directors representing a variety of stakeholders in the North American aniridia community
Peter A. Netland, MD, PhD, University of Virginia
Dr. Peter Netland is Vernah Scott Moyston Professor and Chair of the Department of Ophthalmology at the University of Virginia. His research interests have focused primarily on pharmacologic effects and surgical techniques in glaucoma, and he is an active clinician caring for glaucoma patients. In addition to his recognized expertise in the clinical management of glaucoma, Dr. Netland is a prolific investigator, having written 300 original scientific articles, book chapters, reviews, and published abstracts. He has published six textbooks, including The Pediatric Glaucomas (Elsevier) with Dr. Anil Mandal, and most recently the third edition of Glaucoma Medical Therapy (Kugler Publications) with Dr. Angelo Tanna. He has delivered numerous named and invited lectures on clinical and surgical management of glaucoma, has been director of a long-standing glaucoma fellowship program, has served in leadership positions in medicine, and has received numerous awards.
Dr. Netland became interested in aniridia over 20 years ago through experiences in patient care in patients with aniridia. The complexity of aniridia, the compelling ocular issues in the condition, and the relationships with patients and their families drew him to the condition. In the years since, he has been increasingly involved in patient advocacy groups, research, and clinical care for patients with aniridia. He currently serves as the Clinical Director of the Congenital Eye Disorder Program at UVA.
Shari Krantz, International WAGR Syndrome Association
Shari McCullen Krantz serves as the Executive Director of the International WAGR Syndrome Association (IWSA). She has been actively involved with the IWSA for more than 15 years, having previously served as a Board member and Board Chair. Shari has traveled to many countries to collaborate with researchers and clinicians, and to meet with and support families of individuals with WAGR syndrome. Her passions include facilitating and furthering Wilms tumor research and supporting WAGR families in honor of her daughter, Amy (1995-2015). Amy died from complications of Wilms tumor at the age of 19. Amy’s spirit, commitment to research, and love for others lives on in Shari’s tireless work to help improve the lives of people in the WAGR syndrome and aniridia communities. Shari lives with her family in Maryland.
Susan Wolfe, Vision for Tomorrow
Susan Wolfe has served on the leadership team of The Vision for Tomorrow Foundation (VFT) since 2015 and was recently named its President. Susan is committed to navigating and promoting research to better understand and more effectively treat ocular complications common in aniridia to help improve outcomes for people with low vision. She found the family support from VFT instrumental when her son was diagnosed with aniridia in 2011 and is thankful to be able to serve others now in a similar manner through her position on the board of VFT and work with ANA. Susan lives with her family in Illinois.
Chairperson, Scientific Committee
James Lauderdale, PhD, University of Georgia
Dr. James Lauderdale is an Associate Professor at the University of Georgia in the Department of Cellular Biology and faculty in the Regenerative Bioscience Center and in the Neuroscience Division of the Biomedical and Translational Sciences Institute. His research seeks to understand the genes and pathways that control how the eye is made and how visual information is processed in the brain.
Dr. Lauderdale has spent much of his professional life studying aniridia and the PAX6 gene using mouse and zebrafish models and also in people. His lab is currently working to identify genes that control the development of the fovea using the brown anole, Anolis sagrei, as a model. As a proof of principle, Dr. Lauderdale’s research group, in collaboration with his friend and colleague Dr. Doug Menke, generated the world’s first genetically engineered lizard by introducing in the lizard a mutation common in people with albinism. Like people, albino lizards have a loss of the fovea in the eye, which suggests that the lizard may be a good animal model for understanding foveal development in people. Dr. Lauderdale’s lab is also involved with stem cell research in an effort to create a successful treatment for aniridia-related keratopathy. He has been actively involved with aniridia-related patient advocacy organizations for over 20 years.
Chairperson, Meetings Committee
Robert Grainger, PhD, University of Virginia
Dr. Robert Grainger is the W. L. Lyons Brown Professor of Biology and Professor of Ophthalmology. His research interests concern how the eye is formed during embryonic development. He uses frog embryos as a model for much of his research because of the advantages of studying externally developing embryos for understanding early development in humans. Dr. Grainger has contributed to over 60 research articles published in scientific journals.
In addition, he oversees research projects on congenital eye diseases as the Scientific Director of the Congenital Eye Disorder Program at UVA, including patients who have aniridia. His work on congenital eye diseases and on embryonic development of the eye are complementary, since these congenital eye diseases in human patients often mirror processes seen in frogs. The hope is that, through studying PAX6 mutations in frogs, we can learn more about how PAX6 is important in eye development, and as a result, how to work towards better treatment for patients.
Chairperson, Strategic Planning and Policy Committee
Kelly Trout, BSN, RN, International WAGR Syndrome Association
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.
Member at Large
Janelle Collins has been involved in the aniridia patient community via both patient advocacy groups and Facebook groups for a number of years. She enjoys reading peer-reviewed journal articles and summarizing their contents for the patient community. She also is passionate about welcoming new parents of children with aniridia to the community and assisting them as they begin their aniridia journey. Janelle maintains a small blog called Balls and Balloons, much of which is about her daughter who has aniridia. She lives with her family in Florida.