Tag: Research

Research: Did you grow up in Iowa, or know someone who did?

Are you, or someone you know, a carrier of the FMR1 premutation? If so, you may be eligible for our study of language and social characteristics in fragile X syndrome and the FMR1 premutation! Our research team at Northwestern University is studying language and social characteristics related to the FMR1 gene involved in fragile X



The NFXF Conference, Research Opportunities, and a Fragile X Q&A

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 dictation of the actual webinars. For this webinar, we were joined by Dr. Craig Erickson of the Cincinnati Fragile X



Survey: Parent decision-making to inform Fragile X syndrome clinical drug trials

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 enroll your child in a clinical drug trial, your views on clinical trials more generally, and potential barriers to participating



Zynerba Pharmaceuticals Announces Oral Presentation of ZYN002 Data at the 16th NFXF International Fragile X Conference in July 2018

by NFXF

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 psychiatric disorders with high unmet medical needs, today announced an oral presentation to be given at the16th NFXF (National Fragile



St. John’s Study: Positive Family Intervention for Families of Children with Fragile X Syndrome: Using Telehealth to Reduce Problem Behavior and Improve Maternal Mental Health

by David Salomon

Family running

Free Treatment Study! Are you a mother of a child with Fragile X Syndrome? Would you like free parent training? At St. John’s University, we are conducting a research study on the effectiveness of a parent training program for parents of children with fragile X syndrome. We are currently seeking mothers to volunteer to participate



MGH/Harvard Study: Assessment of Glutamatergic Neurosystem in Fragile X Syndrome for Targeted Therapy

Nick and attendee

MGH/Harvard is recruiting adult males with Fragile X Syndrome, 18 years or older, for a neuroimaging study. Participants will be compensated up to $350.   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



Boston Children’s Hospital Study: Neural Markers in Fragile X Syndrome

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 (FXS). Currently, there is no effective treatment for FXS. Our goal is to find brain markers that predict cognitive, language, and behavioral difficulties in young boys with FXS,



Assessment of Glutamatergic System in Fragile X syndrome

This announcement has been posted as a courtesy by the National Fragile X Foundation (NFXF) on behalf of Massachusetts General Hospital. The announcement and the parties conducting and sponsoring the research meet guidelines established by the NFXF regarding relevancy and appropriateness to Fragile X. The NFXF takes no position and makes no claims as to

General Guidelines for Research Recruitment Postings

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 is from a known or recognized researcher, institution or other research body. In instances when the submitter is not recognized by

CRISPR, a New Genome Editing Tool: Could it Work for Fragile X-Associated Syndromes?

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 in professional training programs, to research in the Fragile X field, by providing funding for a summer project. We understand

Rockefeller University: Potential new treatment for Fragile X targets one gene to affect many

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 University to understand effects of absence of FMRP on a group of the ~1000 mRNA targets that encode proteins that