- Fragile X-associated Disorders
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The National Fragile X Foundation’s biennial international conference presents a unique opportunity where researchers and parents can interact throughout the conference. Many researchers have commented on the experience of socializing with the parents of children with Fragile X, and how the experience has motivated them or reinvigorated their enthusiasm to make a difference in the lives of persons with this disability. The majority of the conference sessions are “Family-Friendly” and cover all three Fragile X-associated Disorders (FXS, FXTAS, FXPOI), with the greatest number of sessions focusing on FXS. In addition to the family-friendly sessions there are many scientific and technical sessions. Some of the benefits from attending include:
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When we come to this Conference, we all step out of our lives. Lives where Fragile X is a diagnosis, an abnormality that sets us apart from the norm, shoving us into a contra reality and a position of minority in our communities and even in our homes, in some cases. Yet at this Conference, our Fragile X family, our kin, our kind, our community amass in such numbers that we become the norm. For five glorious days we are what's expected; we are the center of the universe. » FULL ARTICLE
The National Fragile X Foundation is pleased to announce the 2014 NFXF Conference Award winners. The following individuals are recognized for their outstanding service to the Fragile X community. Congratulations and thank you to the winners for their dedication and passion in moving Fragile X forward. Cindi Rogers received the Al & Melissa Blount Lifetime Achievement Award for sustained and generous support of the NFXF and the Fragile X community. Vicki Sudhalter, PhD,at the Institute for Basic Research, NY, received the Al and Melissa Blount Lifetime Achievement Award for sustained and generous support of the nFXF and the Fragile X community. Peter Todd... » FULL ARTICLE
The 15th International Fragile X Conference is coming too.... » FULL ARTICLE
I can’t tell you the exact date or what else happened that day but I do remember that was the day I found out I had something called Fragile X... Now what the heck does that mean to an 11 year-old girl? Nothing, I tell you. On top of hearing that news, I heard that my brother was never going to be able to talk, which is what truly made my heart drop. » FULL ARTICLE
"The results of genetic analysis confirm the diagnosis of fragile X syndrome, " said the pediatrician. Years later, those words still bring me to tears. We are blessed with two sons, Nathan, 29, and Jason, 24, who both have fragile X syndrome. For those of you who have never heard of fragile X syndrome, it is the most common cause of inherited intellectual disability and the most common known genetic cause of autism. » FULL ARTICLE
Our only child, Kenny, was diagnosed with fragile X syndrome (FXS) at the age of four. When this happened our family was not only at a loss for words, but at a loss for what we could do for our son and for his future. Having our first child meant the world to my husband, Anthony, and me. We were ready to do as much as we could for our child, but, when we noticed Kenny was not meeting his milestones we didn’t know what to do. That’s when my mother-in-law, Esther Torres, suggested we double-check with our pediatrician » FULL ARTICLE
Outside of your Conference itinerary, if you are interested in visiting Disneyland Resort Theme Park and/or Knott's Berry Farm while attending the 14th International Fragile X Conference, this is the place to get discount tickets! The NFXF would like to give a big thanks to for getting these special ticket prices for Conference participants. Tickets must be purchased in advance, so please follow the instructions found in the theme park links below: Disneyland Resort Theme Park Tickets are valid from Saturday, July 12 to Wednesday, July 23, 2014. Ticket store closes at... » FULL ARTICLE
The 14th is full of fun activities, including a Saturday night auction where you can bid on one-of-a-kind items. You can make the auction even better by donating a special item to our lineup! We are seeking donations of the following items… Plus, original artwork such... » FULL ARTICLE
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. Start new lifelong friendships and reconnect with old friends. Online Registration is now open. Register early to save!
Summer may be a time of R&R in the rest of the world, but our devoted Fragile X fundraisers always seem to use the warm months to heat up their engines and put their creative energies into overdrive. Here are some brief reviews on what they were up to. The Mathias Walk for Fragile X – Bernville, PA For the past seven years, Jennifer and Luke... » FULL ARTICLE
Find out where the 14th International Fragile X Conference will be held in 2014. The National Fragile X Foundation's biennial international presents a unique opportunity where researchers and parents can interact throughout the conference. Many a researcher have commented on the experience of socializing with the parents of children with Fragile X, and how the experience has motivated them or reinvigorated their enthusiasm to make a difference in the lives of persons with this disability. The majority of the conference sessions are "Family-Friendly" and cover all three Fragile X-associated Disorders (FXS, FXTAS, FXPOI), with the greatest number of sessions focusing... » FULL ARTICLE