The NFXF Blog
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 [...]
Why Cincinnati? Dr. Craig Erickson Knows
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 [...]
2018 NFXF Summer Scholar Research Awards
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 [...]
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 [...]