Kacee Richter
President, TBRS Community
Our Mission
The Tatton Brown Rahman Syndrome (TBRS) Community is dedicated to supporting families affected by TBRS and advancing research toward effective interventions.
Our Values
We are committed to fostering a supportive, inclusive, and collaborative network of families, clinicians, researchers, and other stakeholders, always prioritizing the needs of patients.
Our Vision
We envision a world where people affected by rare diseases, like TBRS, have a place to go for answers, support, and treatments. It’s as simple as that. Nobody should be left out when it comes to access to health and happiness.
Our Goals
Community Building
Create a welcoming environment where individuals diagnosed with TBRS and their families can connect, support one another, and share valuable information.
Research Advancement
Coordinate and support research efforts to better understand TBRS and identify potential treatments.
Awareness and Education
Educate the broader community to raise awareness about TBRS.
Meet Our Team
Our dedicated team combines personal experience and professional expertise to serve the TBRS Community:
Board of Directors
Our Board of Directors is passionately committed to finding effective treatments and individualized support for those affected by TBRS. They volunteer their time to ensure the success of our community:
Erin Rooker
Marketing Director
Kerry Grens
Vice President, Washington University
Monica Bejano
Board Member
Tim Bernier
Treasurer
Zoe Wisnoski
Secretary
Robert Thibodeau
Board Member
Scientific and Medical Advisory Committee
Our Scientific and Medical Advisory Committee includes leaders in genetics, epigenetics, neurology, hematology, pediatrics, and translational medicine. Their insights guide our research strategy and ensure scientific rigor.
Kacee Richter
President, TBRS Community
Jill Kiernan
Executive Director and Founder, TBRS Community
Dr. Kate Tatton-Brown
St. George’s, University of London
Dr. Harrison Gabel
Washington University
Dr. William Gibson
University of British Columbia
Kerry Grens
Vice President, Washington University
Dr. Serge McGraw
Université de Montréal
Dr. Laura Lavery
Rice University
Dr. Joseph Malak
Bambini Pediatrics
Dr. Katherine King
WashU Medicine
Dr. Rachel Rau
Seattle Children’s
Dr. Marwan Shinawi
Washington University
Dr. Vicken Totten
Emergency Medicine, TBRS Parent
Dr. Marçal Pastor Anglada
University of Barcelona
Dr. Ayala Tovy
Novartis / Baylor
Dr. Irene Valenzuela
Vall d’Hebron Hospital
Dr. Rosanna Weksberg
Sick Kids Hospital
Dr. Timothy Ley
Washington University
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