Fragile X Syndrome: In Pursuit of a Cure Webinar

A global webinar titled “Fragile X Syndrome: In Pursuit of a Cure,” took place on July 22, 2021 to commemorate World Fragile X Day. This complimentary event is co-organized with WuXi AppTec. We are delighted that more than 5,000 registered from more than 50 countries worldwide, coming together to raise awareness of Fragile X, and to foster collaborations towards effective treatments and ultimately a cure.

Agenda

Welcome

    • Hui Cai, VP and Head of Content, WuXi AppTec
    • Katie Clapp, President & Co-Founder, FRAXA Research Foundation

Collaboration and the voices of the patient advocacy groups

    • Katie Clapp, President & Co-Founder, FRAXA Research Foundation
    • Alison Singer, President, Autism Science Foundation
    • Wendy Bruce, Executive Director, Fragile X Association of Australia
    • Yinan Ma, VP, Fragile X Association of China
    • Karen Kelm, Board Member, Fragile X Foundation of Canada
    • Shalini Kedia, Chairperson, Fragile X Society – India
    • Sabrina Muggiati, Creator of the Eu Digo X Program – Brazil
    • Paula Gómez Ortega, Coordinator, Fragile X Syndrome Parent’s Group – Argentina
    • Sandz Fraser, Coordinator, Fragile X South Africa; Owner & Trustee, FiX Africa Special Needs Homeschool
    • Nazhi Tabatadze, Clinic coordinator at Fragile X Center, Georgia
    • Andrea Lee, Executive Director, Fragile X New Zealand

Current clinical studies and practice

    • Craig Erickson, Professor of Clinical Psychiatry, Cincinnati Children’s Hospital and the University of Cincinnati College of Medicine
    • Randi Hagerman, Medical Director, MIND Institute; Distinguished Professor of Pediatrics, Endowed Chair, Fragile X Research, UC Davis Health
    • Elizabeth Berry-Kravis, Professor of Pediatrics, Neurological Sciences, Biochemistry, Rush University Medical Center

Moderator: Ted Brown, President, Fragile X Association of Australia

Patient story: 3 Australian families

New directions in Fragile X syndrome therapeutics

    • Neil Thompson, CSO, Healx
    • Mark Bear, Professor of Neuroscience, Picower Institute for Learning and Memory, MIT
    • Mark Gurney, Chairman & CEO, Tetra Therapeutics
    • Walter Kaufmann, CMO, Anavex Life Sciences; Adjunct Professor of Human Genetics, Emory University
    • Charles Large, CEO, Autifony Therapeutics

Moderator: Richard Soll, Head of Boston Office and Senior Advisor of Strategic Initiatives, WuXi AppTec

Patient story: The Goss family

10-year vision

    • Michael Tranfaglia, Medical Director & CSO, FRAXA Research Foundation
    • Alison Singer, President, Autism Science Foundation
    • Nahum Sonenberg, Professor & Gilman Cheney Chair in Biochemistry, Goodman Cancer Research Centre, McGill University
    • Peter Kind, Director, Simons Initiative for the Developing Brain, Patrick Wild Centre; Professor of Developmental Neuroscience, University of Edinburgh
    • Sumantra Chattarji, Senior Professor, National Centre for Biological Sciences, Tata Institute of Fundamental Science, Bangalore, India
    • Patricia Cogram, Associate Professor, Department of Genetics, IEB, Faculty of Science, University of Chile
    • Shangzhi Huang, Professor of Medical Genetics, Peking Union Medical College
    • Elizabeth Berry-Kravis, Professor of Pediatrics, Neurological Sciences, Biochemistry, Rush University Medical Center

Closing

    • Hui Cai, VP and Head of Content, WuXi AppTec

WuXi AppTec, an open-access platform company with global operations, is hosting this webinar in the hope that these events will not only raise awareness about unmet healthcare needs, but also inspire innovative thinking and catalyze actionable solutions for parents.

We are especially thankful for the wonderful support and contributions from the global Fragile X community:

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