July 22, 2021

Fragile X Syndrome: In Pursuit of a Cure

Date and time

July 22, 2021 ~ July 22, 2021

Dear colleagues and friends,

A global webinar titled “Fragile X Syndrome: In Pursuit of a Cure,” took place on July 22 to commemorate World Fragile X Day. This complimentary event is co-organized with FRAXA Research Foundation. We are delighted that more than 5,000 registered from more than 50 countries worldwide, coming together to raise awareness of this devastating rare disease, and to foster collaborations towards better medicines for patients.

Please click the top banner or here to enjoy the on-demand video.

At WuXi AppTec, we firmly believe in a future where “every drug can be made and every disease can be treated”. That future is only possible if we all work together.

Agenda

08:00 AM - 08:05 AM Welcome
Hui Cai, Program Chair, VP and Head of Content, WuXi AppTec
Katie Clapp, President & Co-Founder, FRAXA Research Foundation
08:05 AM - 08:10 AM 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
08:10 AM - 08:40 AM 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
08:40 AM - 08:45 AM Patient story: 3 Australian families
08:45 AM - 09:35 AM 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
09:35 AM - 09:40 AM Patient story: The Goss family
09:40 AM - 10:10 AM 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
10:10 AM - 10:15 AM Closing
Hui Cai, Program Chair, VP and Head of Content, WuXi AppTec

Speakers

Hui Cai
Program Chair, VP and Head of Content, WuXi AppTec
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
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
Ted Brown
President, Fragile X Association of Australia
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
Richard Soll
Head of Boston Office and Senior Advisor of Strategic Initiatives, WuXi AppTec
Michael Tranfaglia
Medical Director & CSO, FRAXA Research 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