My son has Fragile X Syndrome and I often felt sad that friendship -- which I value enormously -- was something Julian didn’t even notice. He didn’t miss it; I missed it for him. After all, wishing for friends for your kid is pretty universal. Inclusive schools and communities are great on a societal level, but maybe not enough on a personal level.
I recently completed a 10-day trip to the south of the Philippines (Davao) and the north (Manila). This being a second trip to the Philippines, and once again involving a team of experts from the MIND Institute, the focus was on training Filipino professionals in assessment, intervention, and patient advocacy.
We are asking you and other people with FXS to be in this research, because AZD7325 may be helpful for treatment of FXS, but it needs to be tested to be sure. We hope to learn more about the medicine’s safety and if it works on symptoms of FXS.
With a number of colleagues from the UC Davis MIND Institute in California, including Dr. Randi Hagerman, and colleagues from the Asociación X Frágil Colombia, I just completed a 10-day trip throughout Colombia including Cali, Medellin, Bogota, Buqa and Ricaurte (the small, isolated rural town with ten times the typical prevalence of Fragile X). Our work involved numerous talks at medical centers and well-over 75 meetings with individual families.
Researchers at the UC Davis MIND Institute are examing changes in the brain and cognition associated with aging, in males with the Fragile X premutation compared to those without.
This study will evaluate the efficacy and safety of ZYN002, a clear cannabidiol (CBD) gel that can be applied to the skin (called transdermal application) twice a day for the treatment of behavioral symptoms of Fragile X syndrome (FXS).
Most children who come to see me have a combination of developmental delays, communication challenges and symptoms of anxiety, resulting in frequent tantrums. It is common for parents to share details about their daily struggles.
Parents and other caregivers must consider many factors as young people with Fragile X syndrome approach the transition from high school to adulthood. Here we present eight tips based on research from Morgridge College of Education at the University of Denver.
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 [...]