The NFXF Blog
South Carolina Fragile X Awareness Day 2018
July 22, 2018 is Fragile X Awareness Day in South Carolina thanks to the Governor's proclamation. A special thank you to NFXF South Carolina Chapter Leaders Roger and Faye Kuperman for their hard [...]
2018 CSN Awards
At the 16th NFXF International Fragile X Conference, three awards for outstanding leadership and work serving Fragile X families in the NFXF Community Support Network were presented. Please congratulate and, more importantly, thank the [...]
The NFXF Conference, Research Opportunities, and a Fragile X Q&A — Webinar
A discussion of the upcoming conference including how to get the most out of your time, what to look for, and how to have a great time and connect with the community.
Building Social Supports: A Guide for Parents
Limited social skills, social anxiety, and an often narrow range of interests contribute to the difficulties of making new friends.
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 [...]