KMT2C Foundation
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  • Our Mission
  • About Us
  • Events
  • Contact Us
  • Our Partners
  • Blog
  • FAQ

Welcome

WelcomeWelcomeWelcome

KMT2C Foundation is closed from May 15 to August 2025.

We look forward to seeing our families this Fall!

Newsletter Sign Up

Welcome

WelcomeWelcomeWelcome

KMT2C Foundation is closed from May 15 to August 2025.

We look forward to seeing our families this Fall!

Newsletter Sign Up

About Us

Mission

Partnerships & Affiliations

Our Families

The KMT2C Foundation is a patient advocacy group championing clinical research for KMT2C chromosomal abnormalities. The Foundation firmly believes that no two families are going through the same medical journey and understand that the road to a diagnosis is often an emotional one. If you are a research-driven patient, family, or caregiver looking for community of peers, feel free to reach out via "Contact Us" below.

Our Families

Partnerships & Affiliations

Our Families

As of May 2025, the Foundation represents over  one hundred diagnosed individuals and their families. Age of diagnosis ranges from sixteen weeks old to seventy-one years old. Those diagnosed are represented by two variants; de novo and VUS KMT2C gene variants. Our families also include multi-generational families where each generation has a KMT2C chromosomal variant. We proudly stand as one community.

Partnerships & Affiliations

Partnerships & Affiliations

Partnerships & Affiliations

The Foundation has established the first domestic natural history study for KMT2C in partnership with Citizen Health. Our international biorepository is generously hosted through Simons Searchlight. The KMT2C Foundation is also an active member of the Global Advocacy Alliance. As of May 2025 we are publicly listed with the National Organization for Rare Disease (NORD) database. Our rare disease report will be available via the NORD website is anticipated in early 2026.

KMT2C Foundation Board Members

Jordana Koch, Board President

Dr. Alisa Mo, MD, Board Medical Director

Dr. Alisa Mo, MD, Board Medical Director

Jordana Koch has over thirteen years of industry experience within 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 me

Jordana Koch has over thirteen years of industry experience within 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. 

Dr. Alisa Mo, MD, Board Medical Director

Dr. Alisa Mo, MD, Board Medical Director

Dr. Alisa Mo, MD, Board Medical Director

 Alisa Mo received her M.D., Ph.D. at Johns Hopkins University School of Medicine in Baltimore, Maryland and is currently a Child Neurology resident at Boston Children’s Hospital. She is interested in better understanding the genetic and epigenetic basis of neurodevelopmental diseases, with a particular focus on defects in chromatin-related genes.​ 

Biography

Dr. Joshua Shaevitz, Board Director

Dr. Alisa Mo, MD, Board Medical Director

Dr. Joshua Shaevitz, Board 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

Medical and Molecular Research Council

Dr. Matthias Koch, Principal Investigator, Chief Scientific Officer

Dr. Matthias Koch, Principal Investigator, Chief Scientific Officer

Dr. Matthias Koch, Principal Investigator, Chief Scientific Officer

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

Dr. Alisa Mo, MD, PhD

Dr. Matthias Koch, Principal Investigator, Chief Scientific Officer

Dr. Matthias Koch, Principal Investigator, Chief Scientific Officer

Alisa Mo received her M.D., Ph.D. at Johns Hopkins University School of Medicine in Baltimore, Maryland and is currently a Child Neurology resident at Boston Children’s Hospital. She is interested in better understanding the genetic and epigenetic basis of neurodevelopmental diseases, with a particular focus on defects in chromatin-related genes.​ 

Biography

Dr. Sonia Ballal, MD, PhD

Dr. Matthias Koch, Principal Investigator, Chief Scientific Officer

Dr. Sonia Ballal, MD, PhD

 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

Dr. Bernice Morrow

Dr. Matthias Koch, Principal Investigator, Chief Scientific Officer

Dr. Sonia Ballal, MD, PhD

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

Parent Council

Fall 2025 Application Window has Closed

The cohort participants will be contacted via email in August 2025 for the weekly meetings.

Upcoming Events

05/13/2025 - 05/17/2025

American Society of Gene and Cell Therapy 28th Annual Conference

All day

New Orleans, LA

Event Details

05/13/2025 - 05/17/2025

American Society of Gene and Cell Therapy 28th Annual Conference

KMT2C Foundation will be attending the American Society of Gene and Cell Therapy's 28th Annual Meeting in New Orleans! We will be learning a...

Event Details

All day

New Orleans, LA

11/06/2025 - 11/07/2025

KMT2C Foundation Conference

All day

TBD

Event Details

11/06/2025 - 11/07/2025

KMT2C Foundation Conference

We welcome you to pre-register and join the KMT2C Foundation as we discuss the latest publications on the KMT2C chromosone with clinical res...

Event Details

All day

TBD

Past Events

04/24/2025 - 04/25/2025

"Health Innovations on the Rice-TMC Ecosystem: Impacting Houston, Texas and the World"

11:00 AM

-

2:00 PM

Houston, TX

Event Details

04/24/2025 - 04/25/2025

"Health Innovations on the Rice-TMC Ecosystem: Impacting Houston, Texas and the World"

 This two-day symposium goes beyond institutional research—it’s about pioneering impactful innovations with the potential to improve global ...

Event Details

11:00 AM

-

2:00 PM

Houston, TX

04/12/2025

NORD and Baylor College of Medicine Department of Molecular & Human Genetics present Family Day

11:00 AM

-

2:00 PM

Houston, TX

Event Details

04/12/2025

NORD and Baylor College of Medicine Department of Molecular & Human Genetics present Family Day

The National Organization for Rare Disease and the Baylor College of Medicine Department of Molecular and Human Genetics hosted Family Day f...

Event Details

11:00 AM

-

2:00 PM

Houston, TX

03/27/2025

Proclamation for Developmental Disability Awareness Month

6:00 PM

-

7:00 PM

College Station, TX

Event Details

03/27/2025

Proclamation for Developmental Disability Awareness Month

The Foundation invites you to join us at City Hall as we read a joint proclamation with Mayor Pro Tem Smith on developmental disability awar...

Event Details

6:00 PM

-

7:00 PM

College Station, TX

03/01/2025 - 03/31/2025

Developmental Disability Awareness Month

Month-long

Statewide within Texas

Event Details

03/01/2025 - 03/31/2025

Developmental Disability Awareness Month

 

Texas will be having a month long celebration in March in honor of Developmental Disabilities Awareness Month. 

Those with developmental dis...

Event Details

Month-long

Statewide within Texas

Blog

Frequently Asked Questions

The KMT2C Foundation x Citizen Health Natural History Study Campaign has is fully digital.  Participation is done through an online portal, and data can be securely organized and shared. Diagnosed individuals and their caregivers are welcome to create an account via: https://www.citizen.health/partners/kmt2c-foundation.


Our families are engaged in research and are collectively working towards the goal of treatment options that will lead to Quality of Life treatments for our diagnosed loved ones. If you are looking to talk to one of our families before joining, we welcome you to do so! Just reach out to info@kmt2c.org. As a support group, our families "get out what they put in", so conversation is centric around patient experiences and research. As we are virtual and it takes time to build trust, the Foundation maintains a "no screenshot" policy. If this policy is broken, you will be removed from the virtual community and potentially be prohibited from joining the KMT2C Foundation in any other activity. 


If your goal is not inclusive of participating in research, we will leave the proverbial door open. We invite you to contact our campaign partners directly should you change your mind or have inquiries about the repository process. As for data sources, we strongly suggest publications from Dr. Siddhartha Banka. Dr. Banka has pioneered research on the KMT2C chromosome as well as numerous rare diseases, and continues to do so currently. Without participation in the research campaigns, we have no internal resources to provide the inquiring patient / patient advocate.


Contact Us

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The KMT2C Foundation collaborates with researchers and repositories but does not provide medical advice. Shared experiences are for informational purposes only and are not a substitute for professional medical care. Always consult your healthcare provider regarding medical decisions.

KMT2C Foundation

7901 Research Forest Dr, Suite 400 PMB 5022, The Woodlands, TX 77382, USA

info@kmt2c.org Domestic Phone: (832) 429-6496

Hours

The KMT2C Foundation is closed for Summer 2025 from May 15 to August 2025. Sign up for our newsletter for the communications on our Fall return date.

Our Partners


Copyright © 2025 KMT2C Foundation - All Rights Reserved. EIN: 33-3590325

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