The NFXF Blog
Friends of Fragile X Continues Support for the NFXF
A special thank you to Joy and David Justus and the Friends for Fragile X for their continued support of the National Fragile X Foundation. They announced $70,000 in donations to Fragile X and Autism [...]
Minnesota’s Inaugural X Strides
The weather was beautiful for our first X Strides walk, and we had an encouraging turnout! We had 50 people register online and 20 people register on Saturday. It was the best turn out that [...]
Reflections on the NFXF 16th International Fragile X Conference in Cincinnati
NFXF Executive Director Linda Sorensen reflects on her experience at the 16th International Fragile X Conference held in Cincinnati 2018.
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 [...]