Fragile X News

  • Updates on Appropriations The House Appropriations Committee will mark up the '16 Labor-HHS-E spending bill that was passed by the subcommittee last week. The bill includes $153 billion in discretionary funding, which is a $3.7 billion reduction from 2015 enacted levels and $14.6 billion below the President's budget request. The bill does not include line-by-line details, so we may not know specific funding for Fragile X until after the full committee markup. Based upon what has been published: National Institutes of Health (NIH) - The bill provides a total $31.2 billion for... » FULL ARTICLE

    Posted on June 29, 2015 | Categories : Advocacy | 0 Comment
  • The proverb “It takes a village to raise a child” is never truer than when it comes to raising our children with fragile X syndrome. In many cases, we need a community to look out for our children all their lives. Think about your current community – where you live. You have your family, some neighbors, a few friends, and some of you may have extended family living near you. I want you to think about adding another group of people to your community: Your local firefighters. I never thought much about them... » FULL ARTICLE

    Posted on June 11, 2015 | Categories : Education,FXS | 0 Comment
  • This summer, the NFXF will fund four summer student research fellowships at $2,500 each through the Rosen/Weingarden Summer Fellowship Research Fund. Since its inception in 2000, the fund has awarded $225,000 to 90 students all focused on advancing the knowledge and understanding of Fragile X. The 2015 recipients of these fellowships have been awarded to: Kanisha Desai - Emory University Cellular and Biomolecular Characterization of Fragile X Patient Induced Pluripotent Stem Cell Derived Neurons Supervised by Dr. Gary Bassell Nada El-Sayed - Cincinnati Children’s Medical Hospital Center The effect of genetic background on Kv4.2 expression in FXS mouse models Supervised by Christina Gross, PhD Sarah... » FULL ARTICLE

    Posted on June 10, 2015 | Categories : News Reports and Commentaries,Summer Student Fellowship | 0 Comment
  • Date: Tuesday, June 30, 2015 Time: 8:00 pm Eastern / 7:00 pm Central 6:00 pm Mountain / 5:00 pm Pacific Description Fragile X premutation carriers have long expressed concern over issues they might be facing because of having the premutation. Only in recent years has research been making headway into the reality of premutation carrier issues. Our latest Let’s Talk! Webinar features Dr. Randi Hagerman discussing the premutation, its symptoms and the reason those symptoms exist. She also offers some insight into how to stay healthy. The webinar will also include a Q&A session for... » FULL ARTICLE

    Posted on June 5, 2015 | Categories : Let's Talk Webinar | 9 Comments
  • When discussing fragile X syndrome and behavior, it is important to note that - like every person - the focus should not only be on the challenging behaviors that you may see. It is essential that parents look at the whole person. There are behaviors that may be a result of the condition. Many of those behaviors are positive and it is those behaviors you will see most often. Common Behaviors Seen Children and adults with fragile X syndrome (FXS) have a variety of behaviors. Some behaviors you may initially see: Hand flapping or... » FULL ARTICLE

    Posted on June 3, 2015 | Categories : Behavior | 7 Comments
  • Going to an IEP meeting was always an emotional experience for me. After a couple of years of meetings with a group of people—teachers, psychologists, administrators—who had obviously already made many decisions regarding my son, and meetings where a “draft” IEP was handed to me when I walked in the door, I decided to make some changes in what I did. » FULL ARTICLE

    Posted on May 28, 2015 | Categories : Education | 10 Comments
  • 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 disease. Additional Q&A After the webinar, we asked Neuren Pharmaceuticals to answer some of the most pertinent questions about... » FULL ARTICLE

    Posted on May 21, 2015 | Categories : Video | 2 Comments
  • 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 | 9 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

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