We are devoted parents who are passionate about creating a community of support and increasing awareness for CUL3-related neurodevelopmental disorder.

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Following our son's own CUL3 diagnosis in 2022, we quickly realized the need for more support for families who are newly diagnosed with this rare disease. We also identified the need for enhanced awareness among healthcare providers and more accessible resources to help improve delivery of care. Consequently, we recognized the necessity of working with researchers to advance knowledge on CUL3-related disorders.

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We therefore established this organization to help drive connection and increase support and awareness for CUL3-related neurodevelopmental disorder. By forming this patient advocacy group, we hope to make a meaningful impact on the lives of those affected by this rare condition.