Fragile X News

  • In this presentation, Dr Craig Erickson ( and Chair, FXCRC Clinical Trials Committee) discusses the mechanism of action of trofinetide (NNZ-2566, Neuren Pharmaceuticals) and its potential suitability as a treatment for fragile X syndrome. Trofinetide is a synthetic analogue of a molecule derived from IGF-1 (Insulin-Like Growth Factor), a growth factor produced by both the major types of brain cells: glia and neurons. IGF-1 in the brain is critical for normal brain development and for responding to injury and... » FULL ARTICLE

    Posted on May 21, 2015 | Categories : Video | 1 Comment
  • Premutation involvement is different from what is seen in fragile X syndrome (FXS), because the molecular mechanism of involvement in FXS is distinct in that there is a loss of FMRP: the fragile X protein.{{1}} In the premutation, the messenger RNA copies (mRNA) that are made from the DNA and... » FULL ARTICLE

    Posted on May 14, 2015 | Categories : 2014,Carriers,FXTAS | 7 Comments
  • Ready or not – here it comes. For many of us, it is that hot, scorching, sizzling, burning, sweltering time of year filled with sunscreen, extra water bottles and sweat. Oh -- it sounds like someone doesn’t like the summertime. No, I’m good as long as I have air conditioning. I know, I know some people like that hot weather… Making the transition from school into the summer can be challenging for many children. (And I know it can be challenging for the parents too!) Just think – the same adjustments... » FULL ARTICLE

    Posted on May 8, 2015 | Categories : Treatment and Intervention | 0 Comment
  • It has been nearly 15 years since fragile X-associated tremor/ataxia syndrome (FXTAS) was first discovered and described. In that time, our understanding of the disease has increased rapidly. The reason the field has moved so quickly is due to the amount of gene testing done in families with Fragile X, which identifies premutation carriers at risk for the disease. In addition, many fragile X syndrome researchers and clinicians took on FXTAS as a second Fragile X-associated Disorder to treat. WHO FXTAS was first recognized by Dr. Randi Hagerman who noticed that... » FULL ARTICLE

    Posted on April 28, 2015 | Categories : FXTAS | 11 Comments
  • Date: Thursday, April 30, 2015 Time: 8:00 PM Eastern / 7:00 PM Central 6:00 PM Mountain / 5:00 PM Pacific Moderator: Jayne Dixon Weber Guest: Dr. Craig Erickson Description In this presentation, Dr Craig Erickson (Cincinnati Children’s Hospital and Chair, NFXF Clinical Trials Committee) will discuss the mechanism of action of trofinetide (NNZ-2566, Neuren Pharmaceuticals) and its potential suitability as a treatment for Fragile X syndrome. Trofinetide is a synthetic analogue of a molecule derived from IGF-1 (Insulin-Like Growth Factor), a growth factor produced by both the major types of brain cells: glia and neurons.... » FULL ARTICLE

    Posted on April 16, 2015 | Categories : Let's Talk Webinar | Comments Off on Working to restore balance to brain function in FXS (Trofinetide – NNZ-2566, Neuren Pharmaceuticals)
  • Our annual “Let 'Em Know 5K” is coming back - a virtual event that brought together people from all over the country! For the past two years, this event to raise awareness and funds for Fragile X has been growing, and now is the best time to join us! Here’s what you need to know: What is the NFXF Let ‘Em Know 5K? The NFXF Let ‘Em Know 5K is part of July’s National Fragile X Awareness Month “Let ‘Em Know” campaign! The 5K is a virtual run/walk... » FULL ARTICLE

    Posted on April 15, 2015 | Categories : Awareness Day | 1 Comment
  • Working to restore balance to brain function in FXS (Trofinetide - NNZ-2566, Neuren Pharmaceuticals) Date: April 30, 2015 Time: Location: Washington, DC Hosts: Details

    Posted on April 15, 2015 | Categories : Uncategorized | 0 Comment
  • Over the weekend, NBC’s Dateline aired an hour-long special called "On The Brink" that featured children with special needs and the issue of aging out of school-based services. In it, reporters followed several families with the difficulties they faced building a future for their children. The Fragile X community knows these issues all too well. Our websites have resources to help families living with Fragile X with the transition to adulthood. We’d like to highlight some of those resources here for you. Variety of topics and videos in the  If... » FULL ARTICLE

    Posted on April 15, 2015 | Categories : Keeping You Informed | 0 Comment
  • The world can look like a lonely place when first learn that Fragile X runs in your family. That is why one of the first things we tell people who receive a diagnosis is “You are not alone.” Your donations help us to foster real relationships that help our families cope with the daily struggles of Fragile X. Sarah Friesth can attest to that. Sarah is a farm girl from Iowa who moved to Chandler, Arizona ten years ago with her husband Doug. She has two sons: Tate and Trek. While Tate... » FULL ARTICLE

  • Date: Monday April 13, 2015 Time: 8:00 PM Eastern / 7:00 PM Central 6:00 PM Mountain / 5:00 PM Pacific Description How is Fragile X passed on from one generation to the next? What’s the difference between premutation and gray zone? How does mosaicism fit into the Fragile X spectrum? The genetics of Fragile X is a complicated maze of terms and conditions, and we’re here to guide you. Join us for our free Let's Talk! webinar as we speak with special guest Licensed Genetic Counselor Brenda Finucane for an overview of the genetics of... » FULL ARTICLE

    Posted on March 26, 2015 | Categories : Let's Talk Webinar | 0 Comment
  • One of the best programs that I have ever seen was the Adaptive Physical Education (PE) Class that was in place when my son, Ian, was in high school. It was a wonderful program where people with and without disabilities got to know each other. The program improved the confidence in students with developmental disabilities and, maybe even more impressively, it gave typical students a chance to really see past the disability and instead see the person. Ian was based... » FULL ARTICLE

    Posted on March 24, 2015 | Categories : Treatment and Intervention | 1 Comment
  • Every March, we go to Washington, DC, for National Fragile X Foundation Advocacy Day, to advocate for Fragile X funding and important issues that will impact the future of our community. It is an incredible event that not only enlightens our Members of Congress (MOC) on Capitol Hill, but inspires our advocates to make a difference in their lives and the lives of families around the nation. The advocates who joined us in Washington were all volunteers, who spent their own valuable time and money to speak on behalf of... » FULL ARTICLE

    Posted on March 16, 2015 | Categories : 2015 | 0 Comment
  • Participate in Fragile X research from anywhere! This research study is looking at the relationship between sensory processing skills (response to sensory experiences) and the development of daily life skills (adaptive skills). The goal of this research study is to find out more information about what daily living skills children with Fragile X are developing as they grow up, and how their ability to process sensory experiences contributes to their performance and behavior. Who can participate? Parents who have a child with full mutation Fragile X. Child... » FULL ARTICLE

    Posted on March 9, 2015 | Categories : Opportunities for families | 2 Comments
  • The Carolina Institute for Developmental Disabilities (CIDD) at the University of North Carolina at Chapel Hill and the Center for Interdisciplinary Brain Sciences Research (CIBSR) at Stanford University would like to inform you of an exciting new research project involving families who have a child diagnosed with fragile X syndrome. This innovative, five-year, NIMH funded research project was awarded $5 million in funding in the fall of 2012 and the study is now underway. The... » FULL ARTICLE

    Posted on March 8, 2015 | Categories : Opportunities for families | 0 Comment
  • Date: Wednesday, February 18, 2015 Time: 8:00 PM Eastern / 7:00 PM Central 6:00 PM Mountain / 5:00 PM Pacific Description The demands of parenting an older child or young adult with special needs are quite distinct from earlier stages. While special needs require accommodations, the potential youngsters have to contribute to family life, exercise choice and take on increased responsibility needs to be encouraged and nurtured to bring out the best of their capabilities. Becoming familiar with the type of supports available and how to access them should start no later than... » FULL ARTICLE

    Posted on January 30, 2015 | Categories : Event,Let's Talk Webinar | 1 Comment
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