About Us

About Us

Our mission and leadership

Our Mission

The Tatton Brown Rahman Syndrome Community aims to support all families affected by TBRS and advance research toward interventions.

Our Values

The Tatton Brown Rahman Syndrome Community is committed to developing a supportive, inclusive, and collaborative network of families, clinicians, researchers, and other stakeholders. We serve the patient above all else.

Our Goals

  • To create a comforting, inclusive community for diagnosed individuals and their families to connect, support each other, and share information.
  • To coordinate and support research on this newly identified, rare syndrome and identify treatments.
  • To support research and education efforts for this newly identified, rare syndrome.
  • To educate the greater community and raise awareness of TBRS.
  • To manage a global patient registry for individuals diagnosed with TBRS.

TBRS Community Board of Directors

Jill Kiernan
Jill Kiernan
President

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Kerry Grens
Kerry Grens
Vice President

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Kacee Richter
Kacee Richter
Committee Chair

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Jennifer York-Isaacs
Jennifer York-Isaacs
Secretary

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Tom Watson
Tom Watson
Treasurer

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Medical Advisory Board

Dr. Kate Tatton Brown

I am committed to working with families so we better understand TBRS and to ensure the very best care is provided for children and adults with TBRS across the world.

Medical Advisory Board

Dr. Kate Tatton Brown

Professor Kate Tatton-Brown is a Medical Genetics doctor working in London, UK. She studied medicine at the University of Oxford before training first in Paediatrics and then in Medical Genetics. She has been investigating conditions associated with increased growth and a learning disability since 2001 and has published widely in this area. She also holds a specialist growth clinic at St George’s Hospital, London, where she meets patients and their families from around the world.

Kate, as part of a team of scientists and clinicians, first discovered DNMT3A gene alterations as a cause of an overgrowth-intellectual disability syndrome in 2014. Since this time she has been working to delineate the clinical associations of this overgrowth disorder and to develop evidence-based management guidelines. Some of this work has already been published but work is also ongoing and being undertaken in close collaboration with the TBRS family group.

Kerry Grens

My pledge to families is to pursue every research angle we can to find treatments for TBRS.

Medical Advisory Board

Kerry Grens

Kerry Grens is a TBRS parent and the vice president of the Tatton Brown Rahman Syndrome Community board of directors. When she is not busy at those two roles, she earns a living as a senior editor at The Scientist magazine. For 15 years, Kerry has covered health and science news. She previously reported for Reuters Health, WHYY (the NPR and PBS affiliate in Philadelphia), and New Hampshire Public Radio. Her articles have also appeared in Modern Healthcare, public radio’s Marketplace, and Nature. Kerry has a bachelor’s in biology from Loyola University Chicago and a master’s in biological sciences from Stanford University. She lives with her husband, three children, and various animals in Illinois.

Jill Kiernan

The TBRS Community is like my extended family. I am devoted to identifying ways to improve the lives of people affected by TBRS.

Medical Advisory Board

Jill Kiernan

Jill Montgomery Kiernan is the president and founder of The TBRS Community. Her daughter, Aevary, was one of the participants in The Childhood Overgrowth Study that first identified TBRS. Having gone many years without knowing what caused Aevary’s delays and challenges, learning of this breakthrough discovery changed everything. Fueled by a mother’s love and the excitement of finally having a “home” in TBRS, Jill formed The TBRS Community with the mission of supporting families affected by TBRS and furthering research into this rare disease. Jill coordinates The TBRS Community Annual Conferences and works to facilitate communication and partnerships with researchers, doctors, educators, and families. She owns her own business providing services to individuals with disabilities and has worked with this population in varying capacities for more than 20 years. Jill lives with her husband Joe, son Aiden, and daughter Aevary in upstate New York. In her free time, she enjoys being with her family, getting out in nature walking, hiking, and kayaking.

Dr. Timothy Ley

Medical Advisory Board

Dr. Timothy Ley

Dr. Timothy J. Ley received his BA from Drake University, his MD degree from Washington University Medical School, and performed his internal medicine residency at Massachusetts General Hospital. He completed fellowships in Hematology and Oncology at the NIH and at Washington University, and joined the faculty at Washington University in St. Louis in 1986. He now holds the Lewis T. and Rosalind B. Apple Chair in Oncology, is Professor of Medicine and of Genetics at Washington University, and serves as Director of the Stem Cell Biology Section in the Department of Medicine. Ley is a past president of the American Society for Clinical Investigation, past treasurer of the American Association of Physicians, a fellow of AAAS and the American Academy of Arts and Sciences, and a member of the National Academy of Medicine. Ley has performed pioneering studies that have defined the genomic and epigenomic landscapes of acute myeloid leukemia (AML). His laboratory first defined the landscape of DNMT3A mutations in AML in 2010, and their important role in Age Related Clonal Hematopoiesis (ARCH). Both inherited and acquired DNMT3A mutations create an abnormal state that makes hematopoietic stem/progenitor cells more likely to be transformed. A better understanding of these mutations, and additional factors that contribute to transformation, will be important for determining the risk of AML development for patients with Tatton Brown Rahman Syndrome.

Dr. Joseph T Malak

Our practice has a soft spot for children with special needs and complex health challenges.

Medical Advisory Board

Dr. Joseph T Malak

Dr. Malak is the founder of Bambini Pediatrics. A native of Cleveland, Ohio, he attended Western Reserve College (graduating magna cum laude with honors in biology) and Case Western Reserve University School of Medicine. He then moved to Kansas City, and completed a residency in pediatrics at Childrens Mercy Hospital in 1984. From there, he went on to serve as chief resident in pediatrics at Albany Medical Center. In recent years, Dr. Malak has developed a growing interest in the field of integrative pediatrics. He was a charter member of the American Academy of Pediatrics Section on Complementary, Holistic, and Integrative Medicine. He has also been a member of the Holistic Pediatric Association. His interests currently include whole food nutrition (he is a past member of the Weston A. Price Foundation), the Body Ecology diet, and biomedical treatment approaches to autistic spectrum disorders, asthma, allergy, ADHD, and PANDAS.

Dr. Marwan Shinawi​​

Medical Advisory Board

Dr. Marwan Shinawi​​

​​Dr. Marwan Shinawi is a professor of pediatrics at Washington University School of Medicine. He is Board certified in Clinical Genetics and Medical Biochemical Genetics and serves as the program director of the Combined Pediatrics Genetics Residency and the Medical Biochemical Genetics Fellowship.

Dr. Shinawi received his BA from the Hebrew University in Jerusalem, his MD degree from the Technion in Haifa, Israel, and performed his Pediatrics Residency at Rambam Medical Center. He completed fellowships in Clinical Genetics and Medical Biochemical Genetics at Baylor College of Medicine in Houston, TX. Dr. Shinawi joined the faculty at Baylor in 2005 and Washington University School of Medicine in 2009.

Dr. Shinawi’s special interests are in genomic medicine and the genetic basis of neurodevelopmental disorders. He was involved in the discovery and characterization of multiple genetic syndromes. With his clinical and laboratory research experiences, Dr. Shinawi has been the primary author on many publications. Dr. Shinawi has a key role in establishing pioneering specialty clinics at Washington University including the exome and the cancer predisposition clinics.

Ayala Tovy

Our journey might be long, but together, families and researchers can make progress to advance our understanding of the symptoms of TBRS and identify therapeutic avenues.

Medical Advisory Board

Ayala Tovy

Dr. Ayala Tovy is a postdoctoral research associate in the lab of Dr. Peggy Goodell at Baylor College of Medicine. Her extensive research has focused on stem cells, human development, and cancer biology. Recently, her studies have revolved around developmental disorders related to DNA Methyltransferase 3 (DNMT3A), including Tatton Brown Rahman Syndrome (TBRS). Specifically, Dr. Tovy has designed studies enrolling individuals with TBRS to address key questions regarding the role of DNMT3A in regulating hematopoiesis and stem cell growth.

Dr. Tovy received her BSc and MSc from the Tel Aviv University in Israel, and her PhD from the Technion Institute of Technology in Israel. She began her postdoctoral research at the Weizmann Institute of Science before transitioning to her current position. She is actively pursuing a career in academic research.