- Fragile X-associated Disorders
- Treatment & Intervention
- Support the NFXF
We can not thank you enough for advocating for Fragile X in Washington, D.C. this year! Now that we’re back home, we want to share our advocates stories with the rest of the community. If you’ve got a great story or photos, send it to us through this form and we might include it in an upcoming article or campaign!
Please join us on July 16-20, 2014, for the 14th International Fragile X Conference in Orange County, California. Countless number of attendees have called the International Fragile X Conference a life-changing event that anyone impacted by Fragile X should attend. Don’t miss it! Discover the latest research by some of the world’s leading Fragile X experts. Learn new techniques, behavioral interventions and coping strategies. Connect with researchers, clinicians, educators, psychologists and parents. Get the support you need.
. . . Read More: Come to the 14th International Fragile X Conference
One of the most meaningful experiences for a Fragile X family is to meet another family and know you are not alone in this journey. At the National Fragile X Foundation, our mission is to serve you by connecting and supporting individuals and families through our family support network.
. . . Read More: Introducing... The Community Support Network
It’s a breakthrough in understanding the process, but it is not yet a breakthrough for treating the condition. A new study led by Weill Cornell Medical College scientists shows that the most common genetic form of mental disability and autism occurs because of a mechanism that shuts off
In November 2013 Fragile X researchers led by MIND Institute Medical Director Randi Hagerman visited the Valle del Cauca District and the small town of Ricaurte, Colombia, which for years has been known to have a very high prevalence of individuals with intellectual disability and more recently this was found to be fragile X syndrome. The NFXF was along on this journey of discovery.
. . . Read More: UC Davis MIND Institute launches "Colombia Project of Hope"
Genetic disorders in children: An assessment of parental coping strategies and positive growth Following on from our earlier study of how parents disclose a diagnosis of fragile X syndrome to their children, we would like to further understand your experiences surrounding your child, including your emotional reaction and psychological well-being. In particular, we are interested in the support that you as a caregiver have available,
. . . Read More: Assessment of Parental Coping Strategies and Positive Growth
Fragile X got some mainstream exposure on Friday’s episode of General Hospital. One of the main characters, Samantha McCall, talks with her estranged adoptive dad. Trying to reconnect with his daughter, Samantha's Dad mentions that he’s been, "doing some research on the genetic disorder that her brother Danny was born with, fragile X syndrome." He goes on to say that, "It seems like they've made some progress in treating it.” He also made a
. . . Read More: Fragile X Mentioned on General Hospital
Please help the NFXF and the Fragile X clinics gather the information necessary to support clinical trials in fragile X syndrome (FXS) across the country. These studies are designed to find out if medicines commonly prescribed to persons with FXS provide real, meaningful benefits to individuals and families. Please answer a few questions (takes about a minute or two) to complete our survey. Note: Please
. . . Read More: Quick Survey: Treatments for Problem Behaviors in FXS
The National Fragile X Foundation is pleased to announce the 2013 recipients of The Justin Silver Award for Innovative Services. Established by the Silver Family in honor of their son Justin, these grants are awarded to innovative projects at that support historically underserved populations, giving the clinics and the families that visit them opportunities to work closer together. Brian Silver
. . . Read More: Exciting New Awards Granted!
Get up and join me because we're going to advocate our butts off! Maybe advocating is not actually a proven workout technique, but it will result in improvements. is not just about Fragile X. Advocacy Day is about dissolving employment barriers and building economic opportunity. It's about all deserving individuals functioning as productive members of society. It's about
. . . Read More: Advocate Your Butt Off!