Liz is mom to a 30-year-old daughter with a deletion that includes the MYT1L gene. She lives in the Hudson Valley (New York) with her long-time partner, George. Liz has lived both the joys and the challenges of raising a child with special needs, from early intervention through K-12 education, post-secondary education, and transition to adulthood. Liz holds a Bachelor of Science degree in Health Sciences, a Master of Science degree in Internet Technology, and a 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. She has written or contributed to multiple NIH grants and research publications, and is the primary architect of a software platform used at more than 20 academic medical centers across the country. 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 to improve treatment options for all affected families.

Kate lives in Denver, CO with her husband TJ and their two daughters. She is a dedicated mother and professional with a background in education, counseling, and medical devices, bringing a diverse skill set and a personal commitment to the MYT1L Project. She is passionate about advocating for families affected by rare diseases and disabilities, including her own, as her youngest daughter is living with MYT1L syndrome. Initial diagnoses of hypotonia, delayed milestones, Cortical Visual Impairment, and epilepsy eventually led to continued genetic testing and an MYT1L Neurodevelopmental Syndrome diagnosis when their daughter was 18-months-old. Kate and TJ sought out researchers, geneticists, and other families who have been affected by MYT1L Syndrome to learn more and create a sense of community as they navigate the nuances of this rare disease. Kate has a Masters in Education and is a certified Social-Emotional counselor with many years of experience teaching, counseling, and working in non-profit development. She now works at a medical device company as the Director of Strategic Partnerships and is excited to bring her passion and professional experience to the MYT1L Project. Outside of her professional endeavors, she enjoys everything the mountains have to offer and can be found skiing and adventuring with her family and friends. She is passionate about advocating for the rare disease community and working toward a brighter, more inclusive future for all families impacted by rare conditions.

Matt lives in Nashville, Tennessee with his wife Heather and their two children, including a daughter born in 2020 with a mutation in her MYT1L gene. When genetic testing revealed Natalie's diagnosis of MYT1L Neurodevelopmental Syndrome (MNS), he was told there were only about 300 children in the world who had been identified with the syndrome. He felt lost and alone, navigating a health care system largely unfamiliar with MNS. Matt's search for answers about MNS led to the Original 2p25/MYT1L Family Community, the social media group that preceded the creation of The MYT1L Project. Matt was among a core group of parents that participated in the first in-person meeting in the U.S. of families with MNS and researchers. The gathering, at Washington University in St. Louis in 2024, led to the launch of The MYT1L Project. ​ Matt has an extensive background in journalism and health care public relations. He is a public relations specialist at Vanderbilt University Medical Center and holds a Bachelor of Arts in Journalism from Western Kentucky University. Matt is passionate about building a community of support to catalyze research into MNS, with the hope that it will be translated into clinical interventions to help people with MYT1L difference.

Brittany lives in Brooklyn, NY, with her husband, Justin, their two sons, and two dogs. Her commitment to The MYT1L Project Foundation stems from both personal experience and professional expertise. Her older son was diagnosed with a deletion of the MYT1L gene at nine months old, following early signs of developmental delays and hypotonia. This personal journey has fueled her passion for advancing research and supporting families affected by MYT1L Neurodevelopmental Syndrome. Professionally, Brittany is a physician specializing in pulmonary and critical care medicine. She has a background in basic science research, with a particular interest in clinical and translational research. She is committed to leveraging her medical and research expertise to improve the quality of life for individuals affected by MYT1L Neurodevelopmental Syndrome and their families. Brittany earned her Bachelor of Arts in Neuroscience from the University of Southern California before completing her medical degree at the University of Pittsburgh School of Medicine. She trained in internal medicine at Montefiore Medical Center and went on to complete a fellowship in pulmonary and critical care medicine at NewYork-Presbyterian Weill Cornell Medical Center.

Allison is a board member at large and founding member of The MYT1L Project. She has spent over 17 years as an information professional with experience in both the public and private sectors. Her expertise includes information compliance, data management, and systems analysis. She holds a BA in Business, and a Master’s in Library and Information Science. She is focused on the establishment and maintenance of a MYT1L registry to support research efforts. As the mother of an adolescent daughter with MYT1L Syndrome, she is passionate about finding therapies and supports that improve quality of life and opportunities for those affected by the disorder.

Katie is the mother of three wonderful children, including a 15-year-old daughter who has a point mutation on the MYT1L gene. Walking this road with an MYT1L difference has been both deeply meaningful layered with challenges. While she and her husband, Lance, have had their share of uphill climbs related to their daughter’s condition, this experience has also strengthened their family. Drawing on her degree in Advertising and a minor in English from Southern Methodist University, she built a professional career in marketing and advertising within the media industry, including roles at Clear Channel/iHeart Media. Katie managed direct client relationships in sales, developed customized advertising solutions, and organized promotional campaigns and content. She also applied her experience in copywriting and was actively involved in the production of radio commercials. Today, Katie balances her time between being a mother, owning and operating vacation rental properties, and serving as an owner-operator of Inner Space Cavern in Austin, Texas. For years, Katie felt alone in navigating the complexities of her daughter's MYT1L variance. Finding and connecting with the MYT1L community has been a source of hope and belonging, and she is honored to contribute as a part of this team.

Amanda is the mother of a daughter with MYT1L genetic difference. Her daughter was born in 2006 and noticeable differences in her development were recognized by her pediatrician within the first few months, most notably hypotonia and missed motor milestones. This started her family’s journey on uncovering what caused these delays and other challenges for her growing daughter. In 2019 through whole genome testing her daughter’s MYT1L genetic difference was discovered. Amanda and her husband Tom have another daughter and a son who are twins and six years younger than their daughter with MYT1L syndrome. Their family is active in sports, music and traveling. Amanda is passionate about helping individuals who have rare conditions both in her personal and professional life. She has worked in health care in the pharmaceutical industry for over 20 years and has spent since 2016 working in area of rare metabolic conditions. This work is what prompted and gave her confidence to pursue additional testing on her daughter to search for an answer to her many challenges she had growing up. She also spent three years as CEO for an organization that supported individuals with Development Disabilities have gainful employment in an integrated work setting. She is dedicated to being an advocate for her daughter, helping other families with individuals affected by MYT1L syndrome, and helping all individuals who have rare conditions have a voice. Amanda holds a Bachelor of Science degree from Ohio University and a Master of Business Administration from Urbana University.

Farah lives in Connecticut with her husband Nick and their 3 children. Her youngest daughter Olivia was diagnosed with a genetic deletion that includes MYT1L when she was 2 years old. Farah is currently a stay at home mom and is actively involved in her community. She serves on the board of her school district PTA Council, and is focused on projects to drive education and inclusion for children of all abilities. Farah began her professional career in the investment banking industry. She went on to pursue her MBA from The Wharton School and transitioned to brand management in the consumer packaged goods industry. Farah is excited to be a part of The MYT1L Project to help support affected families, and to find better treatments, and eventually, a cure.