Fragile X News

  • Are medical problems more common in individuals with fragile X syndrome (FXS) than in typically-developing children? To help answer that question and guide pediatricians in caring for individuals with FXS, clinicians from the  working with Dr. Sharon Kidd, the FXCRC National Coordinator, set out to determine the most common medical problems found in individuals with FXS. Common FXS Medical Problems and Their Prevalence The table shows the frequency or... » FULL ARTICLE

    Posted on October 30, 2014 | Categories : FXCRC and Clinics | 0 Comment
  • Date: Tuesday, November 11, 2014 Time: 8:00 PM Eastern / 7:00 PM Central 6:00 PM Mountain / 5:00 PM Pacific Description Even for typically-developing children and adults, the holiday season can be a stressful time of year, filled with parties, vacations, and other disruptions in our daily schedule. For individuals living with fragile X syndrome, these type of activities and disruptions can trigger meltdowns and other unwanted behavior. To kick-off the holiday season, we’re pleased to bring you Dr. Karen Riley, a well-regarded behavioral Fragile X expert, as our guest on the latest installment... » FULL ARTICLE

    Posted on October 29, 2014 | Categories : Let's Talk Webinar | 5 Comments
  • The National Fragile X Foundation’s  (CSN) is proud to welcome its newest and most unique group: the Sibling and Self-Advocate Community Support Group! What makes this group so unique is that - unlike all the other groups within the CSN that consist of families centered in one location - the Sibling and Self-Advocate CSN group members are spread out across the U.S. This national group unites siblings and self-advocates from across the U.S. on a mission to make a difference for Fragile X! The group originally went by the name Jr. NFXF and... » FULL ARTICLE

    Posted on October 22, 2014 | Categories : Community Support Network,Sibling & Self-Advocate | 6 Comments
  • In their article, “Public Health Research on Fragile X Syndrome”, the CDC explains their fragile X syndrome (FXS) data collection progress, and results from a recent stakeholder meeting where they identified public health gaps. The NFXF is proud to play a major role in the data collection process as a manager of the Fragile X Clinical & Research Consortium, which collects FXS data in the CDC-funded FORWARD Registry and Database. We also co-sponsored the aforementioned stakeholder meeting in May, which former NFXF Interim Executive Director Jeffrey Cohen attended. We encourage you to... » FULL ARTICLE

    Posted on October 20, 2014 | Categories : In the News | 0 Comment
  • Co-Founder of the NFXF honored with one of the most prestigious awards for pediatricians in the United States Randi Jenssen Hagerman, co-founder of the National Fragile X Foundation (NFXF) and medical director of the , Distinguished Professor of Pediatrics and Endowed Chair in Fragile X Research and Treatment, has received the prestigious C. Anderson Aldrich Award in Child Development for her outstanding contributions in the field of child development from the American Academy of Pediatrics (AAP), the professional organization for pediatricians in the... » FULL ARTICLE

    Posted on October 16, 2014 | Categories : In the News | 2 Comments
  • “Hey” was one of my son Ian’s first words, and what he quickly learned was that whomever he said that to responded — with something. Usually it was with a smile and friendly tone to their voice, and you know how quickly our children pick up on that positive feeling. » FULL ARTICLE

    Posted on October 15, 2014 | Categories : Hope & Inspiration | 1 Comment
  • How has the NFXF helped you and your family over the years? As we close out our 30th year of service to families, we'd like to share pictures and statements of how we've helped you over the years. Please make sure to include a family image along with your submission.

    Posted on October 14, 2014 | Categories : Call for Action | 0 Comment
  • Date: Thursday, October 16, 2014 Time: 8:00 PM Eastern / 7:00 PM Central 6:00 PM Mountain / 5:00 PM Pacific Description The world of treatment can be tough for parents and other caregivers to navigate. One of the most frequent questions they ask is, “Which medication is best for my child?” We're pleased to address this topic as part of our continuing Let’s Talk! webinar series. Returning to our webinar will be Dr. Craig Erickson, a noted Fragile X expert and medical director of the Fragile X Clinic in Cincinnati, Ohio. The webinar will be a Q&A... » FULL ARTICLE

    Posted on October 11, 2014 | Categories : Let's Talk Webinar | 0 Comment
  • A study summary of: A Comparison of Family Financial and Employment Impacts of Fragile X Syndrome, Autism Spectrum Disorders, and Intellectual Disability The full study is available in Research and Developmental Disabilities, July 2014. The CDC also provides a summary of the study's key findings. There are a variety of factors that play a role in how having a child with a disability such as fragile X syndrome (FXS) affects the family. These factors include characteristics of the child (e.g., age, severity of disability, extent of behavior problems), the... » FULL ARTICLE

    Posted on October 9, 2014 | Categories : News Reports and Commentaries | 0 Comment
  • Alcobra is pleased to let you know about a new clinical trial that is currently underway and recruiting patients with fragile X syndrome. The study is seeking male and female participants between the ages of 15 and 55 who have been diagnosed with fragile X syndrome. This clinical trial is studying the effects of a medicine on the cognitive and inattentive symptoms in people with fragile X syndrome. The trial is taking place in 12 U.S. cities. You will not be charged money to participate in this trial. In fact, expenses for travel... » FULL ARTICLE

    Posted on October 2, 2014 | Categories : Opportunities for families | 3 Comments
  • Reposted from NFXF Quarterly, President’s Note, Issue #44, March 2012 How did I wind up here? Eight short years ago I had never heard of Fragile X, let alone CGG repeats, carriers, and mGluR theory. As I settle (humbly) into my term as President of the Board of Directors of the National Fragile X Foundation, I find myself spending considerable time thinking of how all of those fit together— not to mention how I got here. The short answer is simple: Christy and Kenney…the two Daddy’s girls in my life living with Fragile... » FULL ARTICLE

    Posted on October 1, 2014 | Categories : Hope & Inspiration | 0 Comment
  • Does someone you love have fragile X syndrome (FXS)? If so, please know that we are currently enrolling individuals with FXS between 15 and 55 years of age to participate in a medical research study. In this research study, we will evaluate the effects of the investigational drug Metadoxine Extended Release (MDX) on the symptoms of ADHD in individuals with Fragile X. There is no cost to participate in our research study, and compensation for time and travel may be available. To learn more about our research study, please contact: Libby Bliss, Research Manager 206-884-1488 elizabeth.bliss@seattlechildrens.org Seattle... » FULL ARTICLE

    Posted on September 30, 2014 | Categories : Opportunities for families | 0 Comment
  • ABLE Act hits all-time high 380 co-sponsors, appropriation injects $150 million into DOD and PRMRP, NFXF asked to nominate additional peer reviews to the PRMRP, Rep. Klein still refuses to allow debate on KASS, and NIH awards $35 million to Centers for Collaborative Research in Fragile X program. ABLE Act The ABLE Act set the world on fire in Congress and in the mainstream media before the congressional summer recess. There are now 380 co-sponsors... » FULL ARTICLE

    Posted on September 29, 2014 | Categories : 2015 | 0 Comment
  • Neuren Pharmaceuticals is pleased to inform you of an opportunity to participate in a clinical trial for adolescents and adults with fragile X syndrome. This clinical trial is testing an investigational medication, NNZ-2566, as a targeted treatment for fragile X syndrome (FXS).  The purpose of this study is to assess the safety and efficacy of two dose levels of NNZ-2566 when compared to placebo in adolescent and adult males (ages 14-40) who have been diagnosed with FXS.NNZ-2566 has an entirely novel mechanism of action compared with other drugs that have been... » FULL ARTICLE

    Posted on September 29, 2014 | Categories : Opportunities for families | 2 Comments
  • James Colburn was born with fragile X syndrome. At 26, he is a child at heart who finds joy in the smallest things and uses his gift of comedic timing to inspire those around him. James is living proof there is love and laughter in the face of autism and Fragile X. » FULL ARTICLE

    Posted on September 27, 2014 | Categories : Community | 0 Comment
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