Fragile X News

  • This summer, the NFXF funded four summer student research fellowships at $2500 each through the Rosen/Weingarden Summer Fellowship Research Fund. Since its inception in 2000, the fund has awarded $225,000 to 90 students focused on advancing the knowledge and understanding of Fragile X. Today, we’re proud to present the four summaries of this year’s award recipients. Cellular and Biomolecular Characterization of Fragile X Patient Induced Pluripotent Stem Cell Derived Neurons Kanisha Desai Emory University Mentor: Dr. Gary Bassell The loss of the fragile X mental retardation protein (FMRP) in fragile X syndrome has been linked... » FULL ARTICLE

    Posted on September 30, 2015 | Categories : News Reports and Commentaries,Summer Student Fellowship Reports | 1 Comment
  • Learning to ride a public bus independently is a skill that many children with fragile X syndrome (FXS) will be able to learn. Many of them have ridden a school bus and some of the skills are transferrable. If your child has ridden a school bus, here are the aspects they may have encountered: The stop was near your house. The bus was usually on time except in poor weather, and in those cases, the school district would often call to let you know. Your child got to know the bus driver and many of the other students on the bus. Sometimes, someone from... » FULL ARTICLE

    Posted on September 29, 2015 | Categories : Adults,FXS | 2 Comments
  • Date: Thursday, October 8, 2015 Time: 8:00 PM Eastern / 7:00 PM Central 6:00 PM Mountain / 5:00 PM Pacific Description Dr. Craig Erickson makes his third appearance on our Let’s Talk! webinar series, for our ever-popular subject: Medication for individuals living with fragile X syndrome. Dr. Erickson is a noted Fragile X expert and the medical director of the Fragile X Clinic in Cincinnati, Ohio. He is a friend of the NFXF and will join us once again to share his knowledge on Fragile X and medication advice. The webinar will be a Q&A session during which you can... » FULL ARTICLE

    Posted on September 21, 2015 | Categories : Let's Talk Webinar | 0 Comment
  • Congratulations to Ben Moelis for winning an award for his game, which he developed to help Justin Silver – a family friend living with fragile X syndrome – structure his days. Ben Moelis was presented with the Diller Teen Tikkun Olam award that recognizes teenagers committed to social good. Ben and Justin are very close friends.... » FULL ARTICLE

    Posted on September 15, 2015 | Categories : Keeping You Informed | 2 Comments
  • Awareness Month was a Marathon Success! National Fragile X Awareness Month is a group effort. We prepare each July to unite and keep our communities informed about Fragile X, ensuring that one more doctor, one more teacher, one more neighbor knows about our cause and makes life easier for all families living with Fragile X. This year we held our 3rd Annual Let ‘Em Know virtual 5K during National Fragile X Awareness month and it was a huge success! Together you raised $100,000. We couldn’t have done it without you!... » FULL ARTICLE

    Posted on September 15, 2015 | Categories : Awareness Day | 0 Comment
  • A $1.75 million grant to continue research on fragile X syndrome was given to the Institute for Basic Research (IBR), Willowbrook, by the Centers for Disease Control. Fragile X syndrome is the most common known cause of inherited intellectual or developmental disabilities, and the most common known single-gene cause of autism. The grant will be used to expand the and enroll additional participants to collect new data. It will also be used to expand analyses on existing participants to more fully understand the medical, social, and economic needs... » FULL ARTICLE

    Posted on September 14, 2015 | Categories : Advocacy Day,FXCRC and Clinics,In the News,Keeping You Informed | 0 Comment
  • We’re excited to know that Mission to Lars is finally coming to the United States on September 25, 2015! The documentary starring Tom Spicer, a young man living with fragile X syndrome, was screened at our very own 13th International Fragile X Conference in Miami, Florida. Audiences were delighted to follow Tom’s journey, along with his sister Kate, from his home in the United Kingdom to meet Metallica’s Lars Ulrich in person. In the documentary, they fly to the US and drive across the country in hopes of meeting Tom’s idol, and even meeting our founder Dr. Randi Hagerman along... » FULL ARTICLE

    Posted on September 9, 2015 | Categories : Community Support Network,Keeping You Informed | 0 Comment
  • Have you ever shopped in Berkeley? After your obligatory coffee at one of the city’s 10,000 cafes, you must try Shoes on Solano—they even accommodated Tracy’s size “43.” (US size 12; oops, maybe shoe size is like age and shouldn’t be disclosed?). In any case, we were in the Berkeley area for a wonderful daylong conference on fragile X syndrome (FXS) arranged by the Northern California Fragile X Support Group—and what a day it was! Randi Hagerman, Marcia Braden, the two of us, Scott Hall and Allan Reiss were on the slate as presenters. How encouraging to hear Allan say, “The... » FULL ARTICLE

    Posted on September 3, 2015 | Categories : Coffee Talk with Mouse and Tracy,Treatment and Intervention | 0 Comment
  • 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 | 4 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
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