Liz is mom to a 30-year-old daughter with a deletion that includes the MYT1L gene. She knows the joys and challenges of raising a child with special needs from birth to early intervention through transition to adulthood. Liz holds a BS degree in Health Sciences, an MS degree in Internet Technology, and graduate certificate in Health Analytics. While raising her daughter, she has spent her career immersed in academic clinical and translational research. She is Co-Director of Informatics at the Weill Cornell Medical College Clinical and Translational Science Center where she oversees a team of research IT professionals and teaches a graduate course in Research Data Management. Liz is committed to bringing together families impacted by MYT1L differences, establishing a high-quality and accessible MYT1L registry, forging productive relationships with research teams, and working together toward better treatments and, ultimately, a cure.

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Katie is the mother of three wonderful children, including a 15-year-old daughter who has a point mutation on the MYT1L gene. Raising a child with an MYT1L difference can be both meaningful and incredibly difficult. While she and her husband, Lance, regularly encounter struggles related to their daughter’s condition, this experience has also brought their family closer.

Holding a degree in Advertising from Southern Methodist University, Katie has a professional background in marketing and advertising. Today, she balances her time as a mother and as the owner and operator of vacation rental properties.

For years, Katie felt alone in navigating the complexities of an MYT1L variance. Finding and connecting with the MYT1L community has been a profoundly rewarding experience, and she is honored to be a part of this team.

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