Jamie Cannon
Community Experience &
Engagement Coordinator
Engagement Coordinator
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:
Volunteers
Our volunteers generously dedicate their time, expertise, and compassion to support the TBRS Community and the individuals and families we serve. Their commitment is essential to our mission, and without their invaluable contributions our work would not be possible.
Jenny Graham-Beeson
Family and Friends Support
Group Co-lead
Group Co-lead
Colette Corry
Family and Friends Support
Group Co-lead
Group Co-lead
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:
Kacee Richter
President
Kerry Grens
Vice President
Erin Rooker
Marketing Director
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
Jill Kiernan
Executive Director and Founder, TBRS Community
Dr. Kate Tatton-Brown
St. George’s, University of London
Kerry Grens
Vice President
Dr. Harrison Gabel
Washington University
Dr. Timothy Ley
Washington University
Dr. William Gibson
University of British Columbia
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
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