Partnering with the MIND Institute
Last Sunday morning I had the pleasure of joining several members of our board of directors as well as local New York City families as we came together for a conversation about the hopes, [...]
Supporting DOD Research for Fragile X
Several years ago, NFXF Advocates were successful in adding Fragile X research to the Department of Defense's Congressional Directed Medical Research Program (CDMRP) list of authorized research areas. Each year, the NFXF advocates for continuation [...]
Research Updates and a Chicago Chapter
On May 5, the Greater Chicago Fragile X Group held a Research Update featuring Dr. Elizabeth Berry-Kravis. Participants in the meeting heard from Dr. Elizabeth Berry-Kravis as she shared information about current areas of research into [...]
Donate a Tribute Ad in the Conference Program
Send a tribute, message or honor someone who has made a difference in your life. Highlight those living with Fragile X or those whom serve the Fragile X community.
Congress Supports Fragile X Research and Awareness
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 [...]
A note to all of our volunteers
*Actual Linda Sorensen not shown I have always been in awe of the strength and courage of each of you. I know life with Fragile X isn’t easy, and making a commitment to [...]
First “All in for Fragile X” Casino Night a Success!
Central Alabama held its first annual “All in for Fragile X” casino night to benefit the National Fragile X Foundation and its Central Alabama Chapter. It was held at Heatherwood Hills Country Club and featured [...]
Fragile X Conference at Boston Children’s Educates Families
On Saturday, April 7th, 2018, parents, family members, researchers, and clinicians came together at Boston Children’s Hospital (BCH) to learn about behaviors and FXS, how to help individuals with Fragile X, and about ongoing medications [...]
Fragile X Awareness Happens All Year
Fragile X awareness is a 365-day-a-year job, which is why it is one of our core pillars. But, we set aside July every year as a month to help raise awareness of Fragile X, and [...]
A Fun Moms’ Night Out!
Five moms met in East Windsor, CT on March 14th where they shared a meal, talked about housing, getting ready for adult services and had all around a lot of fun! One of the most [...]
CDC Funding for Fragile X – Coalition Letter
There is strength in numbers, which is why we work with other patient advocacy groups on common goals, such as funding at the National Institutes of Health (NIH), the Centers for Disease Control and Prevention [...]
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.
Potential FXS Drug Receives Orphan Drug Status
Yesterday, the drug BPN14770, which is in development for possible treatment of Fragile X syndrome, was granted orphan drug status by the FDA. As the patient advocacy organization for Fragile X, the NFXF will be [...]
FXS and ASD: Similar But Different
This discussion provides clinical perspectives on the behavioral differences between FXS and what are thought to be core features of autism. There is still much to be learned about identifying behaviors that suggest the presence or absence of ASD in FXS.