Premutation Carriers: FXAND, FXPOI, FXTAS and Everything In Between! The National Fragile X Foundation Kansas Chapter is hosting its 7th New Directions in Fragile X Conference that is going to be all about FX carriers! [...]
UPDATE - LIVESTREAM The plan is to offer a livestream of the event. If all goes well, you can view the event online with the below links. 9:00AM-12:00 PM streaming link https://cchmcstream.cchmc.org/MediasiteEX/Play/56e60d779d7e4723b8975daa0c4067151d 1:00 PM-4:00 PM [...]
The purpose of this study is to improve our understanding of how differences in brain activity affect learning, language, and behavior in children with Fragile X Syndrome.
Northwestern University is looking to recruit additional families affected by FXS, and women who carry the FMR1 premutation and who grew up in Iowa.
NFXF Webinar Recap In case you don’t have time, or would prefer the information in written form, we are now providing NFXF Webinar recaps. These are summaries of the webinars, using paraphrases rather than word-for-word [...]
New survey study to investigate the decision-making process among parents considering enrolling their child with FXS in a clinical drug trial. Fill out a questionnaire which will ask you about factors related to deciding to [...]
In March, over 150 NFXF Advocates descended onto Capitol Hill to once again advocate for Fragile X and raise awareness among Congress. A top ask is to join efforts to support Fragile X programs at [...]
Zynerba Pharmaceuticals Announces Oral Presentation of ZYN002 Data at the 16th NFXF International Fragile X Conference in July 2018
PRESS RELEASE FROM ZYNERBA PHARMACEUTICALS Devon, PA, , April 23, 2018 — Zynerba Pharmaceuticals, Inc. (NASDAQ:ZYNE), a clinical-stage specialty neuropsychiatric pharmaceutical company dedicated to developing and commercializing innovative pharmaceutically-produced transdermal cannabinoid treatments for rare and near-rare neurological and [...]
St. John’s is seeking mothers to volunteer to participate in a study on the effectiveness of a parent training program for parents of children with Fragile X syndrome.
MGH/Harvard Study: Assessment of Glutamatergic Neurosystem in Fragile X Syndrome for Targeted Therapy
The aim of the study is to examine problems with a chemical messenger called glutamate in the brain in Fragile X syndrome, and how it impacts sensory, motor and cognitive abilities and implicated structural and functional connectivity.
Massachusetts General Hospital A research study at Massachusetts General Hospital The Massachusetts General Hospital Martinos Center is looking to enroll males with Fragile X Syndrome (FXS), 18 years of age or older, for a [...]
General Guidelines for Research Recruitment Postings Content approved by the National Fragile X Foundation. The research is relevant to Fragile X. Appropriate/relevant approvals from the poster’s institution or governing body are noted. The announcement [...]
Each year, the National Fragile X Foundation funds one or more summer student research fellowships at $2500 each through the Summer Student Fellowship Research Fund. This award is meant to introduce undergraduate students, or students [...]
Above: Mouse brains with Fragile X Syndrome (lower) lose the ability to regulate proteins like Brd4 (green). Photo from The Rockefeller University. A new publication in the journal Cell describes efforts by two groups at Rockefeller [...]
The National Fragile X Foundation is conducting a short five-minute survey to find the aspects of Fragile X syndrome (FXS) that have the greatest impact on the lives of people with FXS and their families/caretakers. [...]