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WHAT WE FIGHT FOR

The DESSH Foundation was established to raise awareness of DeSanto-Shinawi Syndrome (DESSH) among the medical profession and the general public, to advance research and education related to DESSH, and to provide a support-community for patients and families challenged by DESSH.

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We aim to support patients challenged by DeSanto-Shinawi Syndrome by advancing research in pursuit of a cure through awareness and fundraising.

The Foundation: Mission

OUR BOARD OF DIRECTORS

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CAITLIN PICCIRILLO

President and Co-Founder

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JOSEPH PICCIRILLO

VP, Treasurer and Co-Founder

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AMANDA MURPHY

Secretary

The Foundation: Meet the Team

PATRICIA CARDONA

Board Member

AMY MITCHELL

Board Member
Awareness Committee Chair

TARA MOORE

Board Member
Fundraising Committee Chair

STEPHEN PICCIRILLO

Board Member
Chief Finance Officer

MELISSA SIDEBOTTOM

Board Member

NAUSHEEN WASIM

Board Member
Patient and Family Committee Chair

COLLEEN TOSTI

Board Member, ex officio

The Foundation: Meet the Team

OUR MEDICAL ADVISORY BOARD

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DR. MARWAN SHINAWI

Professor of Pediatrics, Division of Genetics and Genomic Medicine at Washington University School of Medicine


Clinical Geneticist, St. Louis Children's Hospital

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DR. AMANDA SMITH

Senior Research Investigator at Incyte, a global biopharmaceutical company focused on finding solutions for serious unmet medical needs through the discovery, development and commercialization of novel medicines.

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DR. CHEOL-HEE KIM

Professor, Chungnam National University
Director, Zebrafish Center for Disease Modeling

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DR. DANIEL VOGT

Assistant Professor in the College of Human Medicine’s Department of Pediatrics and Human Development at Michigan State University.

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DR. ALANA SALVUCCI

Medical Dirctor of Clinical Development at Capsida Biotherapeutics.

The Foundation: Meet the Team
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