A reader asks (and we answer): I heard it can be challenging for individuals with Fragile X to meet new people and be in new situations. Do you have any tips on making the children feel comfortable?
Licensed Marriage and Family Therapist Diane Simon Smith discusses the amount of stress that is often placed upon a marriage when a couple has a child (or children) with fragile X syndrome. Many parents may worry that even the strongest marriages may buckle – or worse – under the intense demand of raising a child with special needs.
Now that I’ve had several full nights of sleep since the conference ended, I’ve finally had time to reflect on an amazing conference. We made so many beautiful memories there that it seems impossible to [...]
Individuals with FXS often have difficulty establishing meaningful friendships. Limited social skills, social anxiety and an often narrow range of interests contribute to these difficulties. Various interventions can increase the social network of those with [...]
The NFXF is proud to announce three different scholarship opportunities available for the upcoming International Fragile X conference in Cincinnati, OH. The conference is a valuable opportunity for families to make connections and learn. It’s [...]
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. This award is meant to introduce undergraduate students, or students [...]
We started November giving thanks for a couple who have spent a lifetime helping the Fragile X community. Margaret and Marty Israel have been volunteering for the Fragile X community for 37 years. On November [...]
We had a wonderful walk with about 70 people in attendance. The course was beautiful as was the weather. Attendees enjoyed a catered lunch on the patio. It was fun to connect with families and [...]
The Child and Adolescent NeuroDevelopment Initiative (CANDI) at the University of Massachusetts Medical School is conducting a pilot research study on Fragile X syndrome, sponsored by Fulcrum Therapeutics. The goal of this study is to [...]
The National Fragile X Foundation is conducting a short five-minute survey to find the aspects of Fragile X syndrome (FXS) that have the greatest impact on the lives of people with FXS and their families/caretakers. [...]
Fifty-two friends and family joined us for an amazing 7th annual Cork and Cafe fundraiser! We were able to have the patio curtains open to give a feel of being outside with seven pouring stations [...]
Both Target and Tommy Hilfiger are announcing new adaptive clothing to accommodate the needs of people with disabilities. Target releases their adaptive clothing for children under their Cat & Jack brand. These clothes include removable [...]
Pictured Above: Fragile X professionals from around the world taking a mud bath, and making the sign of the X, prior to a swim in the Dead Sea, the lowest point on earth at 1,388 [...]
Researchers at Stanford University are studying brain development in relation to behavior, cognition, and mood in girls with fragile X syndrome. The project is designed to improve our understanding of brain and behavioral growth in girls during a critical time in their development. Information gained from this research will improve our understanding of learning, behavioral and emotional development in girls, ultimately facilitating the development of more specific and effective intervention services/therapies in the future.
Why? We invite your child and family to take part in an exciting new study that aims to revolutionize the way we understand Fragile X Disorders by characterizing levels of motor control. What? First, we [...]