Fragile X Syndrome: In Pursuit of a Cure

Dear colleagues and friends,

We are pleased to announce the agenda of a global webinar titled “Fragile X Syndrome: In Pursuit of a Cure,” which will take place on July 22 to commemorate World Fragile X Day. This complimentary event is co-organized with FRAXA Research Foundation and supported by 12 patient advocacy groups worldwide. Nearly 30 top KOLs, including drug developers, researchers, clinicians, and patients, will present at this event to find a cure and enhance awareness of Fragile X syndrome collaboratively.

Please enjoy these two event trailers: program highlights and webinar agenda.

For the convenience of our global audience, the program will be aired on Zoom at 8am – 10:15am PDT (11am -1:15pm EDT) and 7pm – 9:15pm PDT (10pm – 12:15am EDT), respectively. We will send a replay link after the event to those who registered but couldn’t make it or stay through the entire webinar.

AGENDA (Thursday, July 22) for the 1st broadcast

8:00 am (PDT)/11:00 am (EDT) Welcome

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

• Katie Clapp, President & Co-Founder, FRAXA Research Foundation

8:05 am (PDT)/11:05 am (EDT) 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

8:10 am (PDT)/11:10 am (EDT) 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

8:40 am (PDT)/11:40 am (EDT) Patient story: 3 Australian families

8:45 am (PDT)/11:45 am (EDT) 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

9:35 am (PDT)/12:35 pm (EDT) Patient story: The Goss family

9:40 am (PDT)/12:40 pm (EDT) 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 (PDT)/1:10 pm (EDT) Closing

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

Previous episodes of the “Collaborations that Transform” series can be found below:

2021:

• WuXi Rare Disease Awareness Concert on International Rare Disease Day 2021
• Progress in Halting Pompe Disease
• Winning the War on Huntington’s Disease

2020:

• Neurofibromatosis
• Advances in Rare Diseases: Hemophilia
• Spinal Muscular Atrophy (SMA)
• Emerging Opportunities in Multiple Sclerosis and Neuroscience