Empowering families with resources, community, and research for TUBA1A-associated tubulinopathy.
The TUBA1A Foundation is dedicated to supporting families with children affected by TUBA1A through community engagement, advocacy, and research. Our mission is to empower families by providing access to resources, fostering a supportive network, and promoting research that advances understanding and treatment of TUBA1A. Through collaboration with healthcare professionals, researchers, and communities, we strive to improve the quality of life for children and their families, while driving innovation in care and treatment solutions.
Inspired by her son, D’Angelo, who was diagnosed with the rare genetic condition TUBA1A, Cecilia transformed her family’s journey into a mission of creating hope, resources, and opportunities for others facing similar challenges.
Cecilia holds a Master of Social Work (MSW) degree from Washington University in St. Louis. Prior to founding the TUBA1A Foundation, she worked as a clinical social worker, supporting individuals and families through a variety of personal and life challenges. Her professional background, combined with her personal experience as a parent and advocate, provides a unique perspective in leading the Foundation’s mission.
Outside of her work with the Foundation, Cecilia enjoys life with her loving husband, Dan, and their daughter, Taliana. She especially enjoys spending time together as a family, playing games at home, taking walks and planning family get-togethers. Her family remains a constant source of love, inspiration, and motivation behind the work she does.
Cecilia believes meaningful progress happens when families, researchers, clinicians, and supporters come together with a shared purpose. Her vision is to create a connected community that accelerates research, expands support, and brings greater hope to every individual and family affected by TUBA1A.
Tramy combines deep personal commitment with executive leadership to champion rare disease advocacy. Born and raised in the Bay Area, California, Tramy graduated from UC Berkeley with a Bachelor’s degree in Economics and a minor in Business Administration. She brings a robust corporate background to her executive role on the board, having honed her skills in corporate finance and strategic operations across various industries, including banking and software.
Tramy’s unwavering commitment to the foundation is driven by a mission to support her family and community. As a dedicated mother to her six-year-old daughter, Hayley, and her three-year-old daughter, Livvy, her advocacy is rooted in her own family's experience. Livvy was diagnosed with TUBA1A at two months of age; navigating this rare genetic disorder was incredibly difficult due to limited medical research and vast unknowns. Inspired by Livvy's remarkable resilience and driven by her firsthand experience managing these challenges, Tramy is honored to leverage her professional background to accelerate research, expand awareness, and strengthen resources for other families on this challenging journey.
In her spare time, Tramy loves to cook, garden, and spend time travelling with her family.
Jeff Moore, Ph.D. is the Secretary of the TUBA1A Foundation. He is a Professor of Cell and Developmental Biology at the University of Colorado Anschutz Medical Campus. He is broadly interested in how the molecular building blocks of cells, genes and proteins, create complex biology. Jeff's lab studies TUB genes and tubulin proteins with the goal of understanding how changes in these building blocks that occur during evolution or in Tubulinopathies cause changes in the function of cells and in the formation of the brain. His research is supported by funding from the National Institutes of Health, the National Science Foundation, and the Cancer League of Colorado. In addition to running a research lab, Jeff is passionate about training the next generation of biomedical researchers and leaders.
He is excited to help families and individuals affected by TUBA1A better understand the biology of Tubulinopathy and to build a supportive community of families, clinicians and researchers. Jeff lives in Denver with his wife and daughter. He enjoys outdoor adventures and spending time with his family and dogs.
Barbara Fonseca is a nonprofit leader, advocate, and parent whose commitment to the rare disease community began with her son, Nathan (28), who was diagnosed with a disorder of the corpus callosum at eight months old and later identified as having a TUBA1A-related disorder.
Barbara helped inspire the formation of the National Organization for Disorders of the Corpus Callosum (NODCC) in 2003 and currently serves as its Executive Director. For more than two decades, she has worked to connect families with education, support, medical professionals, and research opportunities.
Barbara brings both nonprofit leadership experience and a parent’s perspective to the TUBA1A Foundation. She is passionate about building a strong TUBA1A community, supporting research, and ensuring families have access to meaningful information, resources, and connections.
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