Fragile X News

  • Taylor was born September 6, 2003. She was perfect. She met all her milestones right on time, spoke early, and knew complicated shapes like a pentagon before she even could speak. Taylor was, however, very shy in the presence of new people. She would get so excited at the littlest things and flap her hands very fast. We thought she'd be a terrific drummer! Taylor never liked praise and would cry if you congratulated her too loudly. All around, though, we never suspected anything was wrong. ... » FULL ARTICLE

    Posted on July 28, 2014 | Categories : Hope & Inspiration | 0 Comment
  • 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

    Posted on July 22, 2014 | Categories : 2014 | 4 Comments
  • July 22 is National Fragile X Awareness Day, officially recognized by Congress since 2002. Help spread awareness and understanding for Fragile X by making a donation today. You can even dedicate your donation to a loved one on this special day! Just complete the “I want my donation to be dedicated” box on our donation page. We’d like to thank all of our NFXF Let ‘Em Know participants and donors... » FULL ARTICLE

    Posted on July 22, 2014 | Categories : Awareness Day | 0 Comment
  • 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

    Posted on July 18, 2014 | Categories : 2014,International Fragile X Conference | 0 Comment
  • The 15th International Fragile X Conference is coming too.... » FULL ARTICLE

    Posted on July 18, 2014 | Categories : 2014,International Fragile X Conference | 1 Comment
  • Throughout his life, Pat has experienced many transitions. It started with his transition out of the early intervention program into preschool, then onto elementary school and into his collaborative program. After that, he transitioned to a special school program and onto an adult day program. When Pat is involved in a transition it is almost always planned. When it comes to introducing Pat into a new setting or meeting new people, we usually try to ease him into it by allowing time for “trial days” in new programs. In High... » FULL ARTICLE

    Posted on July 3, 2014 | Categories : Hope & Inspiration | 1 Comment
  • A message from the Jeffrey Cohen, NFXF interim executive director. >> I recently attended a meeting focusing on "The Future of Fragile X Public Health Research.” One of the hot topics was how the collection of public health data can improve how we measure success in clinical trials results.... » FULL ARTICLE

  • In our world of parenting a child with special needs, all you have to do is say “Holland” and everyone knows you are dealing with challenging days and lost dreams. As Emily Perl Kingsley expressed in her famous poem, having a child with special needs is like planning a trip to Italy only to land in Holland. There is a new language, new places to visit, and new people to meet. Everything is different, but that does not mean it’s bad. It has taken me a long time... » FULL ARTICLE

    Posted on July 3, 2014 | Categories : Awareness Day,Hope & Inspiration | 1 Comment
  • 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

    Posted on July 2, 2014 | Categories : 14th Conference Media Center,Hope & Inspiration | 4 Comments
  • "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

    Posted on July 1, 2014 | Categories : 14th Conference Media Center,Hope & Inspiration | 1 Comment
  • The month of July is National Fragile X Awareness Month, an extension of Fragile X Awareness Day (July 22), which is officially recognized by Congress to increase awareness and advocacy for Fragile X. Fragile X syndrome (FXS) is the most common cause of inherited intellectual disability and the most common known genetic cause of autism. Individuals with FXS can experience developmental delays ranging from mild to severe. » FULL ARTICLE

    Posted on July 1, 2014 | Categories : Press Release | 0 Comment
  • 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

    Posted on June 30, 2014 | Categories : 14th Conference Media Center,Hope & Inspiration | 0 Comment
  • In Girl Scouts, there are three different awards you can receive, Bronze, Silver, and Gold. As a member of Girl Scouting, I have received all three awards. The one I feel most proud of is my Gold Award because what I did to earn that award made a real difference to my brother and to my community. I received that award because I organized a “Spread the Word to End the Word” day at my high school, Hopkins Academy. » FULL ARTICLE

    Posted on June 23, 2014 | Categories : Hope & Inspiration | 0 Comment
  • A few months ago we asked the parents of children and adult offspring with fragile X syndrome (FXS) in the National Fragile X Foundation (NFXF) community to answer a few questions. We asked what parents thought were the most important problem behaviors seen in their children and whether they had faced a decision about seeking medication for the behavior(s). Here we present some of the information we received from the NFXF community. The information will help us learn more about the issues and challenges families living with FXS face today. There were a whopping 704 responses to our request! The average age of... » FULL ARTICLE

    Posted on June 18, 2014 | Categories : FXCRC and Clinics,News Reports and Commentaries | 4 Comments
  • As I contemplated the end of the I decided to list the accomplishments and changes that we have witnessed in our son, Dan, since its inception two years and nine months ago. The first time we experienced a change in Dan was at his brother Bob's wedding. Even though we practiced repeatedly, we expected, and we were accepting of, any mumbling of congratulations followed by looking away with his face leaning on his shoulder to escape any eye contact that Dan could muster.... » FULL ARTICLE

    Posted on June 13, 2014 | Categories : Hope & Inspiration,Novartis AFQ056 | 7 Comments
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