POU3F3.org is a mission-driven effort focused on Snijders Blok-Fisher syndrome, a rare neurodevelopmental disorder associated with the POU3F3 gene.
Mission
Our mission is to support and advance research, education, awareness, and collaboration related to Snijders Blok-Fisher syndrome and other POU3F3-related conditions, while helping create momentum toward new therapies, including genetic therapies, for affected children.
What We Believe
We believe children and families affected by rare genetic disorders deserve more than fragmented information and slow progress. They deserve coordinated effort, credible resources, stronger research connections, and a future shaped by real therapeutic development.
How We Work
- support research and scientific collaboration
- provide families with clearer information and resources
- promote awareness and understanding
- help build the long-term foundation needed for treatment development
This work is rooted in both urgency and hope: urgency because families need better answers and support now, and hope because focused collaboration and sustained research can help open the door to better outcomes in the future.
Team
Our team brings together entrepreneurial, analytical, and mission-driven experience to help build a stronger future for children and families affected by POU3F3-related disorder.
Carine Simon, Julian’s Mom
Carine is a senior lecturer in mathematical sciences at Bentley University with a background spanning operations research, analytics, strategy, and risk management. Her professional experience includes teaching and academic leadership roles at Bentley University and MIT Sloan, as well as predictive analytics and corporate strategy work at Liberty Mutual and prior quantitative roles in finance and risk. She brings strong analytical depth, strategic thinking, and systems-level problem solving to the POU3F3 Foundation’s work to accelerate research, strengthen resources for families, and support coordinated progress toward better outcomes for affected children.
Joshua Feast, Julian’s Dad
Josh is a technology founder, entrepreneur, and board leader with a long-standing interest in human development, neurodiversity, and the use of innovation to improve lives. He co-founded Cogito, a pioneering company in real-time AI guidance and conversation intelligence, and has led organizations spanning health, technology, and mission-driven ventures. He is helping build our organization’s strategy, visibility, and long-term capacity to support research, family resources, education, collaboration, and progress toward therapies for children affected by Snijders Blok-Fisher syndrome.
Nadja Schelvis, Ize’s Mom
Nadja is a Dutch program leader known for her drive, collaborative approach, and ability to connect people and organizations around shared goals. She believes strongly in the power of partnership and brings regional stakeholders together to achieve sustainable and meaningful outcomes. She contributes her knowledge of the Dutch healthcare system, along with a broader European perspective on research and innovation. Through the POU3F3 Foundation’s work, she is committed to advancing research that can improve the lives of affected children and provide greater support for the families around them.
Scientific Advisory Board
Our Scientific Advisory Board helps guide the foundation’s commitment to rigorous science, clinically informed priorities, and long-term progress toward meaningful treatments for children and families affected by POU3F3-related disorder.
Alison Schonwald, MD, FAAP
Dr. Alison Schonwald is a nationally recognized leader in developmental and behavioral pediatrics with deep experience in early diagnosis, developmental screening, and care for children with neurodevelopmental conditions. She previously led the Developmental-Behavioral Pediatrics fellowship training program at Boston Children’s Hospital and has taught medical students, residents, general pediatricians, and specialists. Dr. Schonwald has also held leadership roles with Harvard Medical School, Cambridge Health Alliance, the American Academy of Pediatrics, the American Board of Pediatrics, and the Massachusetts Department of Early Education and Care. Her perspective strengthens the foundation’s commitment to clinically informed support for children and families affected by POU3F3-related disorder.
Jae W. Lee, PhD
Dr. Jae W. Lee is a professor in the Department of Biological Sciences at the University at Buffalo whose research focuses on gene regulation, developmental biology, and the molecular pathways that shape the developing brain. His work has helped define key transcriptional and epigenetic mechanisms involved in neural development, including pathways relevant to developmental disorders and brain function. Dr. Lee has made important contributions to understanding how chromatin-regulating complexes influence embryonic development and how disruptions in those systems can contribute to disease. His expertise brings strong scientific depth to the foundation’s goal of advancing rigorous research and building toward future therapies for children with POU3F3-related disorder.
