In the latest from the NFXF Webinar Series, Drs. Georgina Peacock and Jennifer Kaminski from the Centers for Disease Control and Prevention join Dr. Elizabeth Berry-Kravis and NFXF team members Amie Milunovich and Robby Miller, to discuss the advances made in understanding Fragile X Syndrome through FORWARD, the Fragile X Online Registry With Accessible Research Database.
Drs. Peacock and Kaminski each express their gratitude for the partnership with the National Fragile X Foundation and to the families who have participated.
The good news is, there are currently 18 journal publications resulting from FORWARD data, with many more to come!
Dr. Berry-Kravis, FORWARD principal investigator, gives a brief description of key findings and recommendations from some of these publications, including their role in informing new treatments and therapies for individuals with Fragile X syndrome. She also discusses the virtual participation option for adults with Fragile X syndrome.
Robby Miller discusses how FORWARD data benefits the development of resources to help families, including NFXF Treatment Recommendations.
You might also be interested in another video from the NFXF Webinar Series: NIH Fragile X Centers of Excellence, featuring:
- Peter Todd and Emily Allen on behalf of Baylor College of Medicine and University of Michigan Medical School
- Peng Jin on behalf of Fragile X Center at Emory University
- Dr. Craig Erickson from Cincinnati Children’s Hospital Medical Center