Here is Your Recording of:
How FORWARD is Advancing Our Understanding of Fragile X Syndrome

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
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Dr. Elizabeth Berry-Kravis

Dr. Elizabeth Berry-Kravis, MD, PhD
Dr. Berry-Kravis is a professor of  pediatrics, neurological sciences, and biochemistry at Rush University Medical Center in Chicago.  She established the Fragile X Clinic and Research Program in 1991, providing care to over 700 patients with Fragile X syndrome since that time. Her research has included studies of medical issues, epilepsy and psychopharmacology in FXS, neurological problems in FXTAS, and in particular, translational work in FXS including outcome measures and biomarkers, natural history, newborn screening, and clinical trials of new targeted treatments in FXS.

Her laboratory studies the relationship between FMRP and clinical function, and methods for optimizing genetic testing in FXD. In the past 18 years, she’s been site or national principal investigator on 24 clinical trials in FXS and numerous NIH- and CDC-funded projects on FXS. She is on the Scientific and Clinical Advisory Committee for the NFXF. She is chair of the Clinical Committee of the FXCRC. She has received the Jarrett Cole Award for clinical work in FXS in 2002, the Hagerman Award for excellence in FXTAS research in 2004, the FRAXA Champion Award in 2011, the NFXF William and Enid Rosen Research Award in 2014, the March of Dimes Jonas Salk Research Award in 2015, the American Academy of Neurology Sidney Carter Award in Child Neurology in 2016, and the John Merck Fund Sparkplug Award in 2016, all for work in FXS.