National Fragile X Foundation Launches NFXF Biobank™


NFXF Biobank


Accelerating Research into Treatments and Cures of Leading Inherited Cause of Intellectual Disability

Washington, DC (February 6, 2017) – The National Fragile X Foundation (NFXF) announces the launch of the NFXF Biobank™, the first major project of the NFXF Collaborative Biomarker Research Program. This initiative will drive faster and more efficient research into treatments and a cure for Fragile X syndrome, the leading inherited cause of intellectual disability and the leading known single gene cause of autism.

Biological samples will be collected from volunteer participants from the Fragile X community and stored at UC Davis MIND Institute, where the samples will be combined with clinical data from each participant to create unique NFXF Research Ready Materials™. The materials will be used for focused biomarker research, which will inform researchers on the causes of certain behaviors and medical conditions.

“Creating the NFXF Biobank™ is a major milestone that will benefit the entire Fragile X community,” said Tony Ferlenda, CEO of the National Fragile X Foundation. “Right now, it is understood to be the only resource that combines biological samples with clinical information in the Fragile X field, making this program so critical for advancements in research.”

With access to NFXF Research Ready Materials™, any Fragile X researcher will have the ability to correlate behaviors and medical conditions associated with Fragile X to their underlying biology. These correlations are known as biomarkers, and identifying them is critical to allow pharmaceutical researchers to target the underlying biological mechanism to discover treatments or a cure.

“Our organization is committed to funding and facilitating research that drives scientific and medical advances for Fragile X,” said Brian Silver, President of the NFXF Board of Directors. “By creating resources like the NFXF Biobank™, we are helping researchers find better treatments for our community, and driving toward a cure.”

About the National Fragile X Foundation

The National Fragile X Foundation increases awareness of Fragile X, assists and educates individuals and families living with Fragile X through outreach and personal support, and funds and facilitates research that drives scientific and medical advances toward effective treatments and a cure. For more information, please visit

About UC Davis MIND Institute

The UC Davis MIND Institute is a collaborative international research center, committed to the awareness, understanding, prevention, care and cures of neurodevelopmental disorders. For more information, please visit