Fragile X News

  • 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

    Posted on April 16, 2014 | Categories : 2014 | 0 Comment
  • We are recruiting a small group of mothers and their children with fragile X syndrome, between the ages of 10- and 17-years, to participate in a pilot study of a parent-implemented language intervention. The goal of this project is to teach each mother strategies which can be used to support spoken language development in their child with fragile X syndrome. » FULL ARTICLE

    Posted on April 15, 2014 | Categories : Opportunities for families | 1 Comment
  • For years, education and special education services—including therapy, counseling and practices geared toward providing the “least restrictive environment”—have been the mainstay for children, adolescents and young adults with fragile X syndrome (FXS). While intervention literature is filled with reports and studies about special education in general, little to none of it has been specific to FXS. Over the years, the NFXF has worked to fill that gap with expert articles written by individuals representing the educational and therapeutic side of its  (SCAC). More recently, the development of... » FULL ARTICLE

    Posted on April 8, 2014 | Categories : Education | 9 Comments
  • The very earliest signs of a debilitating neurodegenerative disorder, in which physical symptoms are not apparent until the fifth decade of life, are detectable in individuals as young as 30 years old using a new, sophisticated type of neuroimaging, researchers at UC Davis, the University of Illinois and UCLA have found. People with the condition — fragile X-associated tremor/ataxia syndrome (FXTAS) — experience tremors, poor balance, cognitive impairments and Parkinsonism. The genetic condition results from a mutation in the fragile X mental retardation gene... » FULL ARTICLE

    Posted on April 7, 2014 | Categories : FXTAS,News Reports and Commentaries | 0 Comment
  • 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

    Posted on April 3, 2014 | Categories : 2014 | 0 Comment
  • Date: Wednesday, April 9, 2014 Time: 8:00 PM Eastern / 7:00 PM Central 6:00 PM Mountain / 5:00 PM Pacific Description Louise W. Gane, MS, of the UC Davis MIND Institute joins us to review the emotional, psychosocial and long-term planning issues associated with caring for a loved one diagnosed with FXTAS. Examples and inspiration are provided by those who have or are experiencing life with FXTAS. This webinar will focus on those who care for men diagnosed with FXTAS and will consist of a presentation, followed by a Q&A session for which... » FULL ARTICLE

    Posted on March 31, 2014 | Categories : Let's Talk Webinar | 3 Comments
  • Family adaptation is the process by which parents and other family members adjust, accommodate, or transform their roles and responsibilities to better meet current demands. All families must change and adapt over time, but this is especially true for families who have a child with fragile X syndrome (FXS). For these families, adaptation begins with the diagnosis and continues throughout their child’s life.{{1}} {{2}} {{3}} {{4}} {{5}} Adaptation is a complex process and involves changes on multiple levels. Ultimately, positive adaptation... » FULL ARTICLE

    Posted on March 28, 2014 | Categories : News Reports and Commentaries | 0 Comment
  • It’s always fun to look back and see the impressive list of events that so many enthusiastic, creative and energetic fundraisers put on each year. And 2013 was amazing! You can just feel the FUN that was had by all! » FULL ARTICLE

    Posted on March 21, 2014 | Categories : Fundraiser | 0 Comment
  • “Siri, what is fragile X syndrome?” She answers with: “I’m checking….here’s what I found.” She then provides links to the Wikipedia site definition of Fragile X, the NIH genetics home reference page on Fragile X and medicinenet page on fragile X syndrome (FXS). » FULL ARTICLE

    Posted on March 20, 2014 | Categories : Coffee Talk with Mouse and Tracy,Treatment and Intervention | 6 Comments
  • Research Update Meeting March 22, 2014 1-4 P.M. Dr. Elizabeth Berry-Kravis will speak about current and upcoming research opportunities! The event is being hosted by Avis Primack Location 51 Old Oak Drive Buffalo Grove, IL 60089 The meetings space will be in the meeting room of the condo building. Look for signs upon arrival. Please RSVP to Avis at 847-465-1245 or email or Scholarship Opportunities for the 14th Annual International Conference We have developed a scholarship program for attendance to the in Orange County, CA. The deadline for applications submissions is March 31, 2014. For more information or a... » FULL ARTICLE

    Posted on March 19, 2014 | Categories : Chicago | 0 Comment
  • On March 4 and 5, 2014, nearly 170 advocates, including a record number of self-advocates, braved the winter storm for the 11th annual National Fragile X Advocacy Day (NFXFAD). Due to the incoming snow, flights were cancelled left and right. Passengers were stranded at airports, others struggled to rebook their flights. Despite weather conditions, we knew this was our chance to make a statement: With a 160 meetings scheduled, not even Mother Nature could stop us from delivering our... » FULL ARTICLE

    Posted on March 13, 2014 | Categories : 2014 | 4 Comments
  • The bipartisan “Gabriella Miller Kids First Research Act”—a bill authored by U.S. Rep. Gregg Harper with co-authors U.S. Reps. Peter Welch and Tom Cole—is heading to the president’s desk. The bill funds pediatric medical research with the money currently designated for political nominating conventions. “Our champion Rep. Gregg Harper is truly making waves for the Fragile X community right now, and the special needs community as a whole. This is one of the few bills to pass with... » FULL ARTICLE

    Posted on March 13, 2014 | Categories : 2014,Advocacy,Keeping You Informed | 3 Comments
  • Congratulations to the UC Davis MIND Institute—a member of the Fragile X Clinical & Research Consortium— for being named an Intellectual and Developmental Disabilities Research Center. Only a handful of neurodevelopmental centers hold that distinction, and we’re proud to call them our friends and colleagues in the Fragile X community. » FULL ARTICLE

    Posted on March 12, 2014 | Categories : FXCRC and Clinics,Keeping You Informed | 3 Comments
  • On February 12, 2014, President Barack Obama signed an executive order raising the minimum wage for employees of federal contractors, including workers with disabilities, to $10.10/hour beginning in 2015. The signing marks a historic day in the economic advancement of all people with disabilities, including those impacted by Fragile X. Before the announcement, people with disabilities employed by federal contractors could be paid a subminimum wage in accordance with Section 14(c). The National Fragile X Foundation (NFXF) and our... » FULL ARTICLE

    Posted on March 11, 2014 | Categories : Advocacy | 0 Comment
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