Working together toward a cure
Board of Directors
President and Founding Member
Elizabeth (Liz) Wood
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.
Vice President and Founding Member
Kate Kratofil
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.
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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.
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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.
Secretary and Founding Member
Matt Batcheldor
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.
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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.
Treasurer and Founding Member
Brittany Gary
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.
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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.
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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.
Founding Member and Regulatory Lead
Allison Coshenet
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.
Founding Member and Marketing Lead
Katie Clawson
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.
Founding Member
Amanda Eley
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.
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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.
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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.
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Amanda holds a Bachelor of Science degree from Ohio University and a Master of Business Administration from Urbana University.
Founding Member and Fund-Raising Lead
Farah Fehring
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.
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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.
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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.
Clinical/Scientific Advisory Team
Joseph Dougherty, PhD
Joe Dougherty, PhD grew up in Saint Louis, Missouri. He majored in Psychology with a minor in Chemistry at Truman State University in Kirksville, Missouri before joining the Geschwind lab at UCLA for his PhD studies in Neuroscience. The Geschwind lab was a key leader in applying high-throughput approaches for measuring the expression of all the genes to questions of brain development and function. There, Joe studied the role of specific genes and gene expression in the development of the cell types of the mammalian brain, focusing on how neural stem cells become neurons. He later trained as a postdoctoral researcher with Nat Heintz at Rockefeller University where he learned mouse genetics and transgenesis and applied new tools such as the TRAP technology to understand how gene expression differs across cell types the brain, especially those thought to be important in psychiatric diseases.
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Following his postdoctoral work, Dr. Dougherty took a position of Assistant Professor at Washington University in St. Louis where, in 2010, he started his own lab jointly affiliated with the Departments of Genetics and Psychiatry. There, he built a creative and successful team focused on understanding how human genetic risk factors for conditions like autism and IDD alter the development and function of the brain, using mice as a tool (>96% of human genes have a clear parallel in mouse, often with a shared function in brain development). As many genes that cause disease in humans are regulators of gene expression, over the last 15 years, he and his lab have focused on a dual mission of understanding 1) how regulation and dysregulation of gene expression leads to changes in brain, and 2) training the next generation of neuroscientists. To date, nearly 100 students have trained in his lab as undergraduates, graduate students, and postdocs, collectively contributing to over 100 publications describing new discoveries in brain and behavior.
Now a full Professor and Co-Director of the Washington University Intellectual and Developmental Disability Research Center, Dr. Dougherty has pivoted his lab away from pure basic science discoveries toward areas that can provide insight into the conditions of patients. Notably, around 2020 MYT1L had recently been discovered as a key regulator of gene expression that, when altered, could cause challenges such as autism and developmental delay. A family followed by a local clinician had recently discovered that their child had MYT1L mutation, and Dr. Dougherty (along with the Maloney and Kroll labs) embarked on a partnership with this family and clinician to develop new basic science tools to understand the impact of MYT1L mutation on brain development. He developed a mouse model of this patient’s mutation, enabling the team to define what genes are regulated by MYT1L, how the mutation changes their expression, and how this impacts brain development and behavior. This built the foundation for a research program spanning from basic science of MYT1L gene regulation to the testing of pharmacological and genetic interventions for restoring MYT1L function. Dr. Dougherty’s team is excited to continue these investigations to drive a deeper understanding of this critical gene, with the ultimate goal of new treatment options for patients and their families.
Joe Katakowski, PhD
Joe Katakowski, PhD is responsible for leading the development strategy and internal R&D efforts for projects within the RTW Foundation portfolio. Prior to joining RTW Foundation, Joe was a staff scientist at Regeneron where he led a team focused on preclinical development of gene therapies and AAV vector engineering. Before Regeneron, Joe was a principal scientist at Pfizer where he developed and led multiple immuno-oncology programs from early-stage discovery up to IND application, working with a diverse array of modalities including lipid/polymeric nanoparticles, PROTACs, ADCs, antibodies, and small molecules. Prior to Pfizer, Joe was a senior scientist at Innovimmune, a biotech startup. During his PhD, Joe developed unique delivery technologies for nucleic acid-based drugs, seeking to modulate immune responses for autoimmune and oncology indications. His PhD work led to two separate first author publications in Molecular Therapy, as well as additional publications throughout his research career.
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Joe has a BS in human biology from Michigan State University, an MS in cellular & molecular biology from Eastern Michigan University and a PhD in immunology & biomedical sciences from the Albert Einstein College of Medicine.
Lori Isom, PhD
Dr. Isom is the Maurice H. Seevers Professor and Chair of the Department of Pharmacology, Professor of Molecular and Integrative Physiology, and Professor of Neurology at the University of Michigan Medical School. She has served as Director of the Program in Biomedical Sciences and Assistant Dean for Graduate Education in the University of Michigan Medical School. She received her PhD in Pharmacology at Vanderbilt University School of Medicine and then trained as a postdoctoral fellow in the laboratory of Dr. William A. Catterall at the University of Washington. Dr. Isom’s research program at the University of Michigan focuses on voltage-gated sodium channel function and the roles of sodium channel gene variants in developmental and epileptic encephalopathy (DEE), including Dravet syndrome. Her lab investigates SCN1A, SCN1B, and SCN8A DEE variants in mouse models and in human induced pluripotent stem cell (iPSC) neurons and cardiac myocytes. They developed the first large transgenic animal model of Dravet syndrome, a Scn1a haploinsufficient rabbit. Their body of work has provided preclinical evidence for neuro-cardiac mechanisms of Sudden Unexpected Death in Epilepsy. Dr. Isom collaborated with Stoke Therapeutics to develop the first antisense oligonucleotide precision therapeutic agent for Dravet syndrome, which is now in clinical trials. Dr. Isom is Co-PI of the NINDS-funded EpiMVP Center Without Walls. She serves as PI of the NIH funded, Pharmacological Sciences Training Program T32 grant, co-chairs the Dravet Syndrome Foundation Scientific Advisory Board, served on the Board of the American Epilepsy Society, co-chairs the American Epilepsy Society-NINDS Benchmarks committee, chaired the NIH ESTA study section, as well as served on editorial boards of scientific journals. She has received awards for research and mentoring, including a NINDS Javits R37 MERIT award and the University of Michigan Rackham Distinguished Graduate Mentoring Award. She is a Fellow of the American Association for the Advancement of Science, a Fellow of the American Society for Pharmacology and Experimental Therapeutics, and a Fellow of the American Epilepsy Society. Dr. Isom was elected to the National Academy of Medicine in 2021 and received the American Epilepsy Society Basic Science Research Award in 2022.
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