The National Tubulinopathy Congress is guided by a dedicated Steering Committee that brings together the Colorado Tubulinopathy Team alongside leaders from affiliate tubulinopathy foundations and clinicians with expertise across the field. This collaborative group ensures that the Congress reflects the priorities of families, advances in clinical care, and emerging scientific discoveries, while fostering a unified and inclusive approach to progress across all tubulinopathies.
Samantha Abt, TUBB3 Foundation
Samantha Abt lives in Streetsboro, Ohio with her husband, Eric, and their daughter, Cassie. Samantha has been the Vice President of the TUBB3 Foundation for 4 years while also caring for her family. Her daughter's neurological symptoms began showing intermittently in the Summer of 2019, shortly before Cassie’s 2nd birthday, and increased gradually over the next year when they received Cassie’s epilepsy diagnosis. In January of 2022, Cassie’s genetics test revealed a microdeletion in her TUBB3 gene, and by late 2023, all other known possible conditions were ruled out with the results of whole genome sequencing and many other tests. She hopes her work with helping create the National Tubulinopathy Congress and continuing to grow the TUBB3 Foundation helps patients and caregivers receive better information, better treatment options, and quicker diagnosis.
Sarah Marta, TUBB4A Foundation
Sarah Marta is a co-founder of the Kinslow TUBB4A Foundation, a nonprofit dedicated to supporting families and advancing research for TUBB4A-related leukodystrophy. With a background in education, she brings a passion for learning, communication, and community-building to her advocacy work. Sarah became involved in the rare disease community after her daughter Kinsley was diagnosed with a TUBB4A-related disorder. Since then, she has focused on connecting families, clinicians, and researchers while helping grow a supportive global community working toward better understanding and progress for those affected by TUBB4A.
Jennifer Gehring, TUBB2A Foundation
Jennifer Gehring is the Founder and Executive Director of the TUBB2A Foundation, a nonprofit dedicated to accelerating research, awareness, and support for individuals affected by TUBB2A-related neurodevelopmental disorders. Inspired by her lived experience as a rare disease caregiver, she works at the intersection of science, advocacy, and community—bringing together researchers, clinicians, and families to drive discovery and improve care.
In parallel, Jennifer is a Director of Design Operations, Research, and Content, where she specializes in building scalable systems that enable innovation and responsible use of emerging technologies. She is passionate about bridging gaps between complex science and real-world impact, ensuring that families navigating rare disease are supported, informed, and never alone.
More coming soon!