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Board of Directors

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Co-founder / Chair

Amanda Nolan

Amanda's journey as a rare disease advocate began when her son was diagnosed with CUL3-related neurodevelopmental disorder in 2022 after a long and challenging path to diagnosis. Compounding this, she had experienced her own arduous journey to diagnosis for a systemic autoimmune disease and other related health issues. Thus, drawing from personal experiences, Amanda deeply understands the importance of community and the power of advocacy in enhancing health-related quality of life and overall well-being.

With unwavering personal commitment and a burning passion for change, Amanda established this nonprofit to help improve the lives of those affected by CUL3-related neurodevelopmental disorder though support and awareness. 

Despite the many challenges that come with being a chronically ill mother raising a son with a rare genetic disorder, Amanda has embraced the unexpected. She is dedicated to empowering other families affected by CUL3 and fostering unity to improve the lives of those impacted by this rare condition.

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 Co-founder / Vice-Chair

Michael Wohl

Michael's personal journey as a devoted father to his son with CUL3-related neurodevelopmental disorder has profoundly shaped his perspective on the pivotal role that support and advocacy play in improving the quality of life of individuals living with rare genetic conditions.

As a highly respected social science researcher and professor, Michael's dedication extends beyond his role as a father. His relentless pursuit of knowledge and extensive expertise in health and well-being studies have fueled his mission to shed light on the complexities of CUL3 through scientific research efforts. He recognizes that by advancing our understanding of this condition, we can pave the way for improved treatments and enhanced support systems.

Michael is driven by the desire to empower other families facing similar journeys, foster unity, and ultimately, improve the lives of those impacted by this rare condition.

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