Fragile X News

  • What would you like people to know about you? I've been in nonprofit leadership roles for the last 23 years — as both a volunteer, board member, and employee. Small- to mid-sized organizations with a compelling, human services mission, like the NFXF... » FULL ARTICLE

    Posted on August 19, 2014 | Categories : Foundation | 0 Comment
  • The National Fragile X Foundation (NFXF), the world’s leading advocacy organization for people affected by all Fragile X-associated Disorders, has named Tony Ferlenda as chief executive officer. » FULL ARTICLE

    Posted on August 19, 2014 | Categories : Press Release | 0 Comment
  • This project was funded by a CDC cooperative agreement with Dr. Ted Brown (#1U19DD000753-01). Disclaimer: The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the CDC. FORWARD stands for Fragile X Online Registry With Accessible Research Database. It is a project funded by the Centers for Disease Control and Prevention (CDC) that collects data on people with fragile X syndrome (FXS) who attend one of the 27 clinics around the country that are part of the [link id='2303'... » FULL ARTICLE

    Posted on August 15, 2014 | Categories : FXCRC and Clinics | 0 Comment
  • It's beginning to feel like both the scientific world and the rest of the world are coming around to the idea (a fact, really) that Fragile X is about a lot more than just fragile X syndrome. Our community knows that it's about and , too - but we’re also discovering the and are so significant that once there's any mutation in the FMR1 gene, there are health impacts. Whether it's cognitive, emotional, physical, very mild or very significant, when... » FULL ARTICLE

    Posted on August 12, 2014 | Categories : Keeping You Informed,News Reports and Commentaries | 1 Comment
  • We can't thank our sponsors enough for making our conference the best ever! Sponsors Platinum Silver Bronze ... » FULL ARTICLE

    Posted on August 7, 2014 | Categories : 2014 | 0 Comment
  • The National Fragile X Foundation is saddened to learn of the death of Jarrod Tutko Jr., an 8-year-old boy from Harrisburg, Penn., who was living with fragile X syndrome. The Fragile X community mourns the loss of one of our own. Our thoughts and prayers go out to his family and friends. Although this is a tragic loss, we would like to share with the public this is an isolated incident and not reflective or representative of the vast majority of... » FULL ARTICLE

    Posted on August 4, 2014 | Categories : Keeping You Informed | 0 Comment
  • On July 16, 2014, Christine Iwahashi, a research biochemist for more than 30 years at , died of recurrent breast cancer at the age of 58. Since 2001, she has dedicated her life to understanding the causes of disorders related to the Fragile X gene. Ms. Iwahashi obtained her biochemistry degree from UC Davis in 1976, followed by a three-year period of research at Stanford University prior to her return to UC Davis as a staff research biochemist. In addition to her career in research, she... » FULL ARTICLE

    Posted on July 29, 2014 | Categories : FXCRC and Clinics | 1 Comment
  • 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 | 5 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
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