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KMT2C Foundation
  • Home
  • About Us
    • Mission & Vision
    • Leadership
    • Contact Us
  • Conference
  • Get Involved
    • Donate
    • Patient Advocate Council
    • Fundraise
  • Research
    • Simons Searchlight: KMT2C
    • Natural History Study
    • Ari AI Advocate
    • Clinical Research ID CRID
  • Insights
    • Media Features
    • OpEd & Blog
  • Newsletter Signup

Inaugural KMT2C Conference

Inaugural KMT2C ConferenceInaugural KMT2C ConferenceInaugural KMT2C Conference

Connecting Families. Advancing Research. Changing Lives. 

11/19/2026 - Houston, Texas

Keynote by Dr. Siddharth Banka

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Mission & Vision

The KMT2C Foundation is dedicated to improving the lives of individuals and families affected by KMT2C-related disorders. We connect families with researchers and clinicians, advance scientific discovery through collaboration, provide education and support, promote participation in research, and accelerate the development of meaningful treatments and improved standards of care.


Community

For many families, the journey begins with months—or even years—of unanswered questions, specialist appointments, and genetic testing before finally receiving a diagnosis. While a diagnosis can bring long-awaited answers, it often raises new questions about what comes next.


The KMT2C Foundation was created to help families navigate that journey while advancing research that improves understanding, clinical care, and future treatment options. We believe patients, caregivers, clinicians, and researchers all play an essential role in moving science forward.

Partnerships

The Foundation proudly partners with the KMT Gene Family Foundation and KMT2E Foundation. The KMT2C Foundation   established the first digital natural history study for KMT2C and KMT2E in partnership with Citizen Health. The KMT2C and KMT2E biorepositories and annual medical resurveys are generously hosted through Simons Searchlight. Simons Searchlight who also publish a quarterly report on KMT2C and KMT2E via Genes We Study. The KMT2C Foundation is also an active member the Global Advocacy Alliance.

KMT2C Foundation Board Members

Jordana Koch, President & Co-Founder

Christian Schaaf, MD, PhD, FACMG, Board Director of Genetics

Matthias Koch, PhD, Chief Scientific Officer & Co-Founder

Jordana Koch has over fourteen years of industry experience within private equity, venture capital, FinTech and bio-pharma operations. Start-up involvement has been from seed stage to fully funded with pharmaceutical backing. Teams have included C-suite members and senior executives from North America, EMEA, LATAM, Switzerland, APAC, and 

Jordana Koch has over fourteen years of industry experience within private equity, venture capital, FinTech and bio-pharma operations. Start-up involvement has been from seed stage to fully funded with pharmaceutical backing. Teams have included C-suite members and senior executives from North America, EMEA, LATAM, Switzerland, APAC, and India. Jordana is the founding member of the KMT2C Foundation. She is a long-standing Autism Spectrum Disorder and 2E (Twice Exceptional) advocate. She also serves on the Parent Genetic Family Advisory Council at Texas Children's Hospital. 

Matthias Koch, PhD, Chief Scientific Officer & Co-Founder

Christian Schaaf, MD, PhD, FACMG, Board Director of Genetics

Matthias Koch, PhD, Chief Scientific Officer & Co-Founder

Matthias Koch is an Assistant Professor for Biology at Texas A&M University, where his lab studies how the clinical important bacterial pathogen Pseudomonas aeruginosa interacts with the physical environment of the host to regulate its pathogenicity.

Matthias found his passion for diseases related research and medical care during a communi

Matthias Koch is an Assistant Professor for Biology at Texas A&M University, where his lab studies how the clinical important bacterial pathogen Pseudomonas aeruginosa interacts with the physical environment of the host to regulate its pathogenicity.

Matthias found his passion for diseases related research and medical care during a community service gap-year after high school at the University Hospital in Freiburg, Germany.


Matthias started his career by exploring the world of astro physics, particle physics, and computer science, which earned him a MSc in Physics. Intrigued by the world of microbes and the molecular processes in the cell, he went on to apply his knowledge about physics to biological systems, for which he received a PhD with summa cum laude in Biophysics at the Department of Microsystem Engineering at his home university. He finally fostered his love for biology and diseases related work during a Postdoc in the Department for Molecular Biology and the Lewis-Sigler Institute for Integrative Genomics at Princeton University, where he made the remarkable discovery that bacteria have a sense of touch similar to humans to regulate their virulence related genes to their mechanical environment in the host.


Matthias has received numerous conference awards, the Wolfgang Genter Early Career Award for his PhD thesis, a National Institute of Health (NIH) Maximizing Investigators’ Research Award (MIRA), and published his work in prestigious journals such as Science, Nature Photonics, Nature Microbiology, the Proceedings of the National Academy of the Sciences of the United States of America (PNAS), and more.

Biography

Christian Schaaf, MD, PhD, FACMG, Board Director of Genetics

Christian Schaaf, MD, PhD, FACMG, Board Director of Genetics

Christian Schaaf, MD, PhD, FACMG, Board Director of Genetics

Executive Medical Director, Institute of Human Genetics, Heidelberg University Hospital


Full Professor, Human Genetics, Heidelberg University

Christian is the medical director and department chair of the Institute of Human Genetics at Heidelberg University. He studies the genetic causes of neurodevelopmental and neuropsychiatric disorders. 

Executive Medical Director, Institute of Human Genetics, Heidelberg University Hospital


Full Professor, Human Genetics, Heidelberg University

Christian is the medical director and department chair of the Institute of Human Genetics at Heidelberg University. He studies the genetic causes of neurodevelopmental and neuropsychiatric disorders. His work led to the discovery of multiple new disease genes, and three disorders have been named after him: Schaaf-Yang syndrome, Bosch-Boonstra-Schaaf Optic Atrophy syndrome, and Marbach-Schaaf Neurodevelopmental syndrome. 


Christian’s groundbreaking work has been recognized with many awards, including the William K. Bowes Award for Medical Genetics by Partners Healthcare and Harvard Medical School and the inaugural Seldin-Smith Award for Pioneering Research by the American Society for Clinical Investigation. 

Christian has authored four books, including a major textbook of medical genetics that has been translated into several languages. He is a passionate teacher and has shared his love for human genetics with thousands of students and trainees around the globe. 

Most importantly, he is an advocate for individuals with rare disease, serving on the scientific advisory boards of the Foundation of Prader Willi Research, the USP7 Foundation, the NR2F1 Foundation, and the Prader Willi Vereinigung Germany. 

Biography

Frederic Vigneault, PhD, Treasurer

Joshua Shaevitz, PhD, Strategic Planning Director

Christian Schaaf, MD, PhD, FACMG, Board Director of Genetics

Frederic Vigneault, Ph.D., is a molecular biologist with a track record of translating breakthrough science into therapeutic innovation. Prior to co-founding Unravel Bio, he was a Senior Scientist at Harvard’s Wyss Institute, where he contributed to pioneering work in CRISPR gene editing, synthetic biology, and DNA technologies that helpe

Frederic Vigneault, Ph.D., is a molecular biologist with a track record of translating breakthrough science into therapeutic innovation. Prior to co-founding Unravel Bio, he was a Senior Scientist at Harvard’s Wyss Institute, where he contributed to pioneering work in CRISPR gene editing, synthetic biology, and DNA technologies that helped launch multiple biotech startups. Boston Children's Hospital

Divisional Wellness Officer; Associate Director, Fecal Microbiota Transplantation; Attending Physician, Division of Gastroenterology, Hepatology and Nutrition, and

Assistant Professor of Pediatrics, Harvard Medical School

Biography

Alisa Mo, MD, PhD, Medical Director

Joshua Shaevitz, PhD, Strategic Planning Director

Joshua Shaevitz, PhD, Strategic Planning Director

Alisa Mo received her M.D., Ph.D. at Johns Hopkins University School of Medicine in Baltimore, Maryland and trained in Child Neurology and Neurogenetics/Behavioral neurology at Boston Children’s Hospital. She is now an Assistant Professor at the Institute for Genomic Medicine at Nationwide Children's Hospital/The Ohio State University. Dr

Alisa Mo received her M.D., Ph.D. at Johns Hopkins University School of Medicine in Baltimore, Maryland and trained in Child Neurology and Neurogenetics/Behavioral neurology at Boston Children’s Hospital. She is now an Assistant Professor at the Institute for Genomic Medicine at Nationwide Children's Hospital/The Ohio State University. Dr. Mo is a physician-scientist who sees patients in autism and neurology clinics and does research on the genetics and mechanisms of neurodevelopmental diseases.​  

Biography

Joshua Shaevitz, PhD, Strategic Planning Director

Joshua Shaevitz, PhD, Strategic Planning Director

Joshua Shaevitz, PhD, Strategic Planning Director

Joshua Shaevitz is Professor of Physics and Biophysics in the Department of Physics and Lewis-Sigler Institute for Integrative Genomics at Princeton University. He did undergraduate work at Columbia University in New York and received his Ph.D. in Physics from Stanford University in 2004. Prior to his appointment at Princeton, he was a Mi

Joshua Shaevitz is Professor of Physics and Biophysics in the Department of Physics and Lewis-Sigler Institute for Integrative Genomics at Princeton University. He did undergraduate work at Columbia University in New York and received his Ph.D. in Physics from Stanford University in 2004. Prior to his appointment at Princeton, he was a Miller Research Fellow at the University of California, Berkeley. Shaevitz's work focuses on precision measurements in a variety of biological systems, focusing on topics related to cell shape in bacteria, active matter and pattern formation in groups of moving cells, and the quantification of animal behavior. He is the recipient of several awards and honors, including a National Science Foundation CAREER Award, an APS Fellowship, and a Presidential Early Career Award for Scientists and Engineers (PECASE), among others. He also serves as co-Director of the Center for the Physics of Biological Function and is the Director of Graduate Studies for the Graduate Program in Biophysics at Princeton University. 

Biography

Alyssa Tran, Global Director of Regulatory Affairs & Compliance

Alyssa Tran, Global Director of Regulatory Affairs & Compliance

Alyssa Tran, Global Director of Regulatory Affairs & Compliance

 Alyssa Tran has extensive clinical research experience with rare diseases through many capacities and roles servicing in the academic medical center area. Her knowledge and experience encompass FDA regulated trials, investigator initiated studies and longitudinal, natural history studies. Currently serving as a Senior Regulatory Affairs 

 Alyssa Tran has extensive clinical research experience with rare diseases through many capacities and roles servicing in the academic medical center area. Her knowledge and experience encompass FDA regulated trials, investigator initiated studies and longitudinal, natural history studies. Currently serving as a Senior Regulatory Affairs Associate at Baylor College of Medicine (BCM), she leverages her clinical research experience with regulatory affairs and research coordination, logistics and planning of clinical research operations, along with research compliance, community engagement, in addition to on-boarding and mentoring new investigators and research coordinators.  

She serves as the research liaison for BCM Molecular and Human Genetics Department and Texas Children’s Hospital Genetics Administration Office. She also has been actively serving on the BCM Institutional Review Board (IRB) as a member and recently joined the University of Houston IRB as an alternate member. Recently, she was appointed as an Academic Partner with the UDN CEC (Undiagnosed Diseases Network Community Engagement Committee) Leadership. Moreover, she currently serves as the Program Manager for NORD COE (National Organization for Rare Disorders Center of Excellence) at Baylor College of Medicine (BCM)/Baylor St. Luke’s Medical Center (BSLMC)/Texas Children’s Hospital (TCH).

Alyssa holds a Bachelor of Science from University of Houston. She has attained certification through Society of Clinical Research Associates (SOCRA). Alyssa has been organizing the TCH Rare Disease Day Event since 2024 in celebration of Rare Disease Day awareness and education initiatives with NORD.

Alyssa is an active member of the Regulatory Affairs Professional Society (RAPS) and contributes as the Chair for the RAPS Houston Local Networking Group. 

Biography

Medical and Molecular Research Council

Matthias Koch, PhD & Principal Investigator

Zhaolan (Joe) Zhou, PhD, Genomics and Molecular Bio-physics

Matthias Koch, PhD & Principal Investigator

Matthias Koch is an Assistant Professor for Biology at Texas A&M University, where his lab studies how the clinical important bacterial pathogen Pseudomonas aeruginosa interacts with the physical environment of the host to regulate its pathogenicity.

Matthias found his passion for diseases related research and medical care during a communi

Matthias Koch is an Assistant Professor for Biology at Texas A&M University, where his lab studies how the clinical important bacterial pathogen Pseudomonas aeruginosa interacts with the physical environment of the host to regulate its pathogenicity.

Matthias found his passion for diseases related research and medical care during a community service gap-year after high school at the University Hospital in Freiburg, Germany.


Matthias started his career by exploring the world of astro physics, particle physics, and computer science, which earned him a MSc in Physics. Intrigued by the world of microbes and the molecular processes in the cell, he went on to apply his knowledge about physics to biological systems, for which he received a PhD with summa cum laude in Biophysics at the Department of Microsystem Engineering at his home university. He finally fostered his love for biology and diseases related work during a Postdoc in the Department for Molecular Biology and the Lewis-Sigler Institute for Integrative Genomics at Princeton University, where he made the remarkable discovery that bacteria have a sense of touch similar to humans to regulate their virulence related genes to their mechanical environment in the host.


Matthias has received numerous conference awards, the Wolfgang Genter Early Career Award for his PhD thesis, a National Institute of Health (NIH) Maximizing Investigators’ Research Award (MIRA), and published his work in prestigious journals such as Science, Nature Photonics, Nature Microbiology, the Proceedings of the National Academy of the Sciences of the United States of America (PNAS), and more.

Biography

Alisa Mo, MD, PhD, Pediatric Neurology

Zhaolan (Joe) Zhou, PhD, Genomics and Molecular Bio-physics

Matthias Koch, PhD & Principal Investigator

 Alisa Mo received her M.D., Ph.D. at Johns Hopkins University School of Medicine in Baltimore, Maryland and trained in Child Neurology and Neurogenetics/Behavioral neurology at Boston Children’s Hospital. She is now an Assistant Professor at the Institute for Genomic Medicine at Nationwide Children's Hospital/The Ohio State University. D

 Alisa Mo received her M.D., Ph.D. at Johns Hopkins University School of Medicine in Baltimore, Maryland and trained in Child Neurology and Neurogenetics/Behavioral neurology at Boston Children’s Hospital. She is now an Assistant Professor at the Institute for Genomic Medicine at Nationwide Children's Hospital/The Ohio State University. Dr. Mo is a physician-scientist who sees patients in autism and neurology clinics and does research on the genetics and mechanisms of neurodevelopmental diseases.​  

Biography

Zhaolan (Joe) Zhou, PhD, Genomics and Molecular Bio-physics

Zhaolan (Joe) Zhou, PhD, Genomics and Molecular Bio-physics

Frederic Vigneault, PhD, Chief Scientific Officer & Co-Founder, Unravel Biosciences

Zhaolan (Joe) Zhou is a Professor of Genetics and Neuroscience at the University of Pennsylvania. After receiving a BS degree from Nankai University and a PhD from Harvard University, he completed postdoctoral training at Harvard Medical School. Since joining UPenn, his research program has focused on elucidating the pathophysiology of ne

Zhaolan (Joe) Zhou is a Professor of Genetics and Neuroscience at the University of Pennsylvania. After receiving a BS degree from Nankai University and a PhD from Harvard University, he completed postdoctoral training at Harvard Medical School. Since joining UPenn, his research program has focused on elucidating the pathophysiology of neurodevelopmental disorders with defined genetic causes, including Rett syndrome and CDKL5 deficiency disorder (CDD), as well as complex conditions such as autism spectrum disorder and major depressive disorder influenced by environmental factors. In recent years, his team has developed the first allelic series of mouse models that faithfully recapitulate human mutations associated with Rett syndrome and CDD and engineered genetically modified mice to investigate stress-related neuroepigenetic mechanisms in the brain. By integrating genetic, genomic, physiological, and behavioral approaches, the Zhou Lab has uncovered novel insights into disease mechanisms, identified robust and quantitative biomarkers, and is actively pursuing innovative therapeutic strategies for neurodevelopmental and neuropsychiatric disorders.

Biography

Frederic Vigneault, PhD, Chief Scientific Officer & Co-Founder, Unravel Biosciences

Frederic Vigneault, PhD, Chief Scientific Officer & Co-Founder, Unravel Biosciences

Frederic Vigneault, PhD, Chief Scientific Officer & Co-Founder, Unravel Biosciences

Frederic Vigneault, Ph.D., is a molecular biologist with a track record of translating breakthrough science into therapeutic innovation. Prior to co-founding Unravel Bio, he was a Senior Scientist at Harvard’s Wyss Institute, where he contributed to pioneering work in CRISPR gene editing, synthetic biology, and DNA technologies that helpe

Frederic Vigneault, Ph.D., is a molecular biologist with a track record of translating breakthrough science into therapeutic innovation. Prior to co-founding Unravel Bio, he was a Senior Scientist at Harvard’s Wyss Institute, where he contributed to pioneering work in CRISPR gene editing, synthetic biology, and DNA technologies that helped launch multiple biotech startups. Boston Children's Hospital

Divisional Wellness Officer; Associate Director, Fecal Microbiota Transplantation; Attending Physician, Division of Gastroenterology, Hepatology and Nutrition, and

Assistant Professor of Pediatrics, Harvard Medical School

Biography

George Chen, PhD, Assistant Project Scientist, Geschwind Lab, UCLA

Frederic Vigneault, PhD, Chief Scientific Officer & Co-Founder, Unravel Biosciences

George Chen, PhD, Assistant Project Scientist, Geschwind Lab, UCLA

  George Chen, Ph.D. Is an assistant project scientist in the laboratory of Daniel Geschwind at UCLA. Over the past five years, he has led efforts to develop CRISPR-based gene activation approaches as precision therapies in cellular models of profound autism. Currently, his research focuses on understanding the role of KMT2C in neurodevel

  George Chen, Ph.D. Is an assistant project scientist in the laboratory of Daniel Geschwind at UCLA. Over the past five years, he has led efforts to develop CRISPR-based gene activation approaches as precision therapies in cellular models of profound autism. Currently, his research focuses on understanding the role of KMT2C in neurodevelopment using patient-derived stem cells and brain organoid models. 

Biography

Sonia Ballal, MD, PhD, Pediatric Gastroenterology

Frederic Vigneault, PhD, Chief Scientific Officer & Co-Founder, Unravel Biosciences

George Chen, PhD, Assistant Project Scientist, Geschwind Lab, UCLA

 Boston Children's Hospital

Divisional Wellness Officer; Associate Director, Fecal Microbiota Transplantation; Attending Physician, Division of Gastroenterology, Hepatology and Nutrition, and

Assistant Professor of Pediatrics, Harvard Medical School

Biography

Bernice Morrow, PhD, Pediatric Cardiology

Bernice Morrow, PhD, Pediatric Cardiology

Bernice Morrow, PhD, Pediatric Cardiology

Albert Einstein College of Medicine Professor, Department of Genetics 

Professor, Department of Obstetrics, Gynecology and Women's Health

Professor, Department of Pediatrics (Pediatric Cardiology)

Sidney L. and Miriam K. Olson Chair in Cardiology

Director, Division of Translational Genetics, Department of Genetics

Faculty Advisor, Genomics Core, Department of Genetics

Biography

Patient Advocate Council

Fall 2026 Applicants

The Fall 2026 cohort participants will be contacted via email in August 2026. The Foundation does openly on a rolling basis encourage families of diagnosed individuals and patients themselves to send an introduction email with your skillset, particularly if you have a background in science, fundraising, or a talent you feel will benefit the KMT2C Foundation in our mission. A letter of interest can be sent to info@kmt2c.org.


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