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 [...]
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 [...]
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 [...]
Each year, the National Fragile X Foundation funds one or more summer student research fellowships at $2,500 each through the Summer Student Fellowship Research Fund [Note: now the Randi J. Hagerman Summer Scholar Research [...]
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. [...]
Pictured Above: Fragile X professionals from around the world taking a mud bath, and making the sign of the X, prior to a swim in the Dead Sea, the lowest point on earth at 1,388 [...]
While every Fragile X clinic is set up a little differently, they all offer similar services. They are staffed by people who understand Fragile X. Examples of evaluations offered at clinics through an initial intake include: medical, [...]
University of Maryland [mpc_button preset="preset_191" url="url:https%3A%2F%2Fwww.surveymonkey.com%2Fr%2F8F8GFL6|title:Link||" font_preset="mpc_preset_62" font_color="#ffffff" font_size="12" font_line_height="1" font_transform="uppercase" font_align="inherit" title="Take the Survey" icon="fa fa-angle-right" icon_color="#ffffff" icon_size="12" icon_effect="stay-right" icon_gap="20" background_color="#00934a" border_css="border-width:2px;border-color:#00934a;border-style:solid;border-radius:5px;" padding_divider="true" padding_css="padding-top:11px;padding-right:30px;padding-bottom:11px;padding-left:40px;" margin_divider="true" margin_css="margin-top:6px;margin-right:10px;margin-bottom:4px;margin-left:10px;" hover_font_color="#ffffff" hover_icon_color="#ffffff" hover_background_color="#00934a" hover_border_css="border-width:2px;border-color:#00934a;border-style:solid;border-radius:5px;"] Hello, [...]
NN107 FX-LEARN is currently looking to enroll children with Fragile X Syndrome (FXS) for a research study conducted by the Network for Excellence in Neuroscience Clinical Trials (NeuroNEXT). Dr. Elizabeth Berry-Kravis at Rush University is [...]
Vanderbilt University Medical Center [mpc_image image="28431" padding_divider="true" padding_css="padding-bottom:20px;" image_opacity="100" image_inner_border_gap="0" effect="none" image_hover_opacity="100"] Do you have an adolescent child diagnosed with Fragile X syndrome or Angelman syndrome? We Need: Either two females, or [...]
Why You Should Visit a Clinic By Jayne Dixon Weber While every Fragile X clinic is set up a little differently, they all offer similar services. They are staffed by people who understand Fragile X. [...]
A discussion for parents of children with special developmental needs about evidence, consensus and anecdotal-based interventions.
