Fragile X News

  • Date: Thursday, September 17, 2015 Time: 8:00 PM Eastern / 7:00 PM Central 6:00 PM Mountain / 5:00 PM Pacific Description What causes some of the challenging behavior in individuals with FXS, and what are some techniques that can help you overcome those challenges? Developmental FX’s Tracy Stackhouse, MA, OTR and Sarah “Mouse” Scharfenaker, MA, CCC-SLP (great friends of the Foundation!) are dropping by to answer your questions at our latest Let’s Talk! webinar. The webinar will be a Q&A session for which you can submit your questions to Tracy and Mouse. Registration for live attendance to the Q&A... » FULL ARTICLE

    Posted on August 26, 2015 | Categories : Let's Talk Webinar | 0 Comment
  • Creating an IEP – or Individualized Educational Program – can be an incredibly confusing and daunting experience. The “alphabet soup” of acronyms and legalese often increases the anxiety and uneasiness for families. There are often many professionals in the room, some just popping in and out during the meeting, and families can feel isolated and not fully part of the process. One way to offset these feelings is to prepare ahead of time. We’ve designed this article to be an at-a-glance... » FULL ARTICLE

    Posted on August 19, 2015 | Categories : FXS,Treatment and Intervention | 2 Comments
  • Didn’t participate in the Let 'Em Know 5K? Here is your chance to drive awareness every day. They are also great for back to school! Buy your Limited Edition 2015 Let 'Em Know keychains... » FULL ARTICLE

    Posted on August 12, 2015 | Categories : Awareness Day | 0 Comment
  • One of the most challenging things for my son, Ian, to do is ask another person (not mom or dad) for something – like a favor or request – in an appropriate way. This became important when he started working at a “real” job: a grocery store. Whenever he wanted or needed to ask for certain things at work, he asked me to do the asking. Asking for himself, I realized, was a skill he had to learn. So I approached teaching this skill systematically: talk about the whole process, model... » FULL ARTICLE

    Posted on July 30, 2015 | Categories : Treatment and Intervention | 3 Comments
  • Ever wished you had a card explaining Fragile X to give to a stranger who is staring at your child? Does your child have a health issue that you want others to know about in case of an emergency? Does your child want his/her own card about Fragile X to give out to others? Well, here you go! As part of Fragile X Awareness Month, we have created three different cards for these situations! Use these print-it-yourself "Know Me" FX Awareness cards on Avery 8871 sheets or similar products. Download For Adults with fragile X... » FULL ARTICLE

    Posted on July 17, 2015 | Categories : Awareness Day | 5 Comments
  • In a report earlier this year, Yahoo News and Katie Couric shared insight on Fragile X and its link to autism and other well-known conditions. In that report, she asked an important question: “If the Fragile X protein is so critically important and may be related to a whole host of diseases, why is there not more funding for Fragile X research?” Our Fragile X community understands that we need to improve awareness. That’s why we’re happy to partner with Yahoo for Fragile X Awareness Month to offer others a glimpse... » FULL ARTICLE

    Posted on July 8, 2015 | Categories : Awareness Day,In the News,Keeping You Informed | 5 Comments
  • 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 | 10 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 | 9 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
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