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↗.
How to Watch
Enter your name and email address below for your access to the on-demand recording of the webinar:
Recent Posts You May Be Interested In
New Resources– Genetics of Fragile X
The Genetics of Fragile X can be confusing. We’ve developed a series of handouts to help explain how changes in the FMR1 gene happen, how Fragile X is inherited, and what CGG repeat ranges mean for individuals and families.
Study: Examining Factors that Influence Expectations for Individuals with an Intellectual or Developmental Disability (IDD)
Dr. Grace Francis from George Mason University is conducting an online survey to explore factors that affect the expectations for individuals with intellectual or developmental disabilities (IDD), including Fragile X syndrome (FXS), after they finish school.
Help Us Reach the FORWARD-MARCH Enrollment Goal
We’re on a mission to enroll 600 participants with FXS born in 2003 through 2017. We’re halfway there and need your superhero help to hit our target!