Dr. Elizabeth Berry-Kravis at Rush University is the Protocol Principal Investigator and is leading a national study, NN107 FX-LEARN. There are two purposes to the study. First, to find out if the drug AFQ056, made by the pharmaceutical company Novartis, is safe and has beneficial effects on learning in children who have Fragile X syndrome (FXS). Second, to find out if a structured language intervention can help children with Fragile X syndrome communicate better.
If you have a son or daughter with Fragile X syndrome between 6 and 18 years of age, you and your child are invited to participate in a research study being conducted by Dr. Jamie [...]
Looking for: Parents/caregivers of children (males and females) with the full mutation of Fragile X syndrome between the ages of 3-17 years old. What you will do: Online interview - requires a computer and usually [...]
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 [...]
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 [...]
The National Fragile X Foundation is pleased to announce this year's NFXF Junior Investigators Awards – students, postdocs, fellows and new faculty members (within 3 years of first appointment) – whose area of focus is [...]
I am very excited to see fragile X stakeholders coming from around the world to attend the 2018 NFXF International Fragile X Conference July 11-15 in my hometown, Cincinnati, Ohio. This is the truly greatest meeting [...]
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. The student’s work can be in the area of Fragile [...]
I remember registering for the NFXF International Fragile X Conference in 2014 and thinking, is it really worth it? I had heard some anecdotal stories from friends and knew that I would get a lot of information, [...]
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 [...]
Click and scroll to see all photos. A few FX warriors braved the wet winter day to spend some quality time with the patient horses of Gallop NYC. Some of us rode the horses, [...]
A study by Vanderbilt Kennedy Center A study for family members with intellectual members of adults with intellectual & developmental disabilities. Anonymously share your experience with residential care services and respite care services. 10 randomly [...]
Among families and professionals, in schools and therapeutic settings, there is already a great deal of confusion about the relationship between genetic test results and developmental diagnoses. We challenge the the notion that autism itself can be directly diagnosed through a blood test.
Who Can Participate? Boys with a diagnosis of fragile X syndrome Aged 3 to 10 years, inclusive Shows disruptive behaviors (e.g., aggression, self-injury, property destruction) What Participation Involves: Completing questionnaires about your child’s behavior [...]