Board of Directors
Amanda
Co-founder / Chair
Amanda’s journey as a rare disease advocate began with her son’s diagnosis of CUL3-related neurodevelopmental disorder in 2022. Like many families affected by rare genetic conditions, she now found herself navigating a maze of unanswered questions and limited information. Confronting the reality of an under-researched disorder, she was driven to create a supportive and informed community for others on a similar path.
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Amanda herself lives with a chronic illness (Sjögren’s disease). As a local support group leader for several years, she has seen firsthand the power of connection and the impact of informed advocacy in improving quality of life and driving meaningful change.
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Her passion and commitment to securing a brighter future for her son - one with greater understanding, support, and opportunities - led her to establish CUL3 Support & Awareness. With degrees in experimental psychology and over 15 years working as a public servant, Amanda brings an empathic and analytical approach to her work.
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She is committed to advocating for a future where individuals with CUL3-related neurodevelopmental disorder receive the recognition, research, and resources they deserve.
Michael
Co-founder / Vice-Chair
As a devoted father to a child with CUL3-related neurodevelopmental disorder, Michael understands firsthand the challenges that come with navigating a rare genetic condition.
A respected researcher and professor of social psychology, Michael has spent his career studying health, well-being, and human resilience. His expertise brings a scientific and analytical perspective to patient advocacy, helping to bridge the gap between lived experience and research-driven progress. He is committed to advancing awareness, understanding, and scientific inquiry into CUL3-related conditions, recognizing that greater knowledge leads to improved care and resources.
