The Weiss-Kruszka Research Foundation is a nonprofit organization founded by a parent of a child with Weiss-Kruszka Syndrome (WKS) in collaboration with clinicians and researchers dedicated to advancing understanding of the condition. Our mission is to connect families, clinicians, and researchers to accelerate research, increase awareness, and improve the lives of individuals and families affected by WKS.
We believe progress happens through collaboration. By bringing together families, researchers, clinicians, and advocates, we foster a supportive global community while advancing scientific discovery. We provide trusted resources, educational information, and opportunities for families to connect, while supporting research into ZNF462 and promoting greater awareness among healthcare professionals and the public.
About Us
Our Team
Board of Directors
Valerie Skoro
Founder & President
Valerie Skoro is the Founder and President of the Weiss-Kruszka Research Foundation and mother to her son, Luka, who is diagnosed with Weiss-Kruszka Syndrome. Recognizing the need for greater research, awareness, and family support, she established the foundation to help accelerate progress for the Weiss-Kruszka Syndrome community. Before founding the organization, Valerie built a career in corporate fintech, spending more than a decade leading strategic growth initiatives for technology companies.
Oliver Bell, PhD.
Chief Scientific Officer
Oliver Bell, PhD, is an Associate Professor in the Department of Cancer Biology and the Department of Stem Cell Biology and Regenerative Medicine at the Keck School of Medicine of the University of Southern California. His research focuses on chromatin biology, epigenetics, and the mechanistic regulation of heterochromatin in development and disease to advance drug discovery and therapeutic strategies. Dr. Bell earned his PhD from the Friedrich Miescher Institute for Biomedical Research and the University of Basel, and completed postdoctoral training at the Stanford University School of Medicine.
Paul Kruszka, MD, FACMG
Paul Kruszka, MD, FACMG, is the Director of Pediatric Genetics at the University of Virginia and the Genentech Professor of Pediatrics. His research focuses on large-scale population genomics and the application of genomic sequencing to improve diagnosis and care for individuals with rare and undiagnosed diseases. Previously, he served as Chief Medical Officer at GeneDx and as a medical geneticist at the National Human Genome Research Institute at the National Institutes of Health. Dr. Kruszka earned his medical degree from the University of Michigan Medical School and is a graduate of the U.S. Naval Academy.