Fragile X News

  • Now Available: To complete the initial collection of Fragile X Clinical and Research Consortium (FXCRC) we are proud to feature the final document: Autism Spectrum Disorder in Fragile X Syndrome. The summary below was extracted in part from the Autism Spectrum Disorder in Fragile X Syndrome Consensus Document and from original text by Dr. Dejan Budimirovic of the Kennedy-Krieger Institute FX Clinic in Baltimore, MD. About The FXCRC Consensus Documents The Consensus Documents are supported in part by a CDC-funded grant and created and reviewed by a variety of FXCRC clinicians... » FULL ARTICLE

    Posted on December 18, 2014 | Categories : Support and Resources | 1 Comment
  • WASHINGTON, D.C. – Culminating a nearly eight year effort spanning four sessions of Congress the ABLE Act passed the Senate late Tuesday night with a vote of 76-16. The bill overwhelmingly earlier this month with a vote of 404-17. If signed by President Obama, as expected, this landmark bill will become the law of the land and give millions of families supporting loved ones living with Fragile X and other disabilities the right to save for their future like every other American. A rare bipartisan effort from its... » FULL ARTICLE

    Posted on December 17, 2014 | Categories : 2015,Advocacy,Advocacy Day | 6 Comments
  • Every day Jayne Dixon Weber, Director of Support Services at the NFXF, responds to emails and phone calls from parents and caregivers from around the world who have questions about Fragile X. Today we want to share her recent email response to a family member who’s inviting a child with fragile X syndrome over for dinner for the first time. Jayne’s recommendations can be replicated for many family gatherings and social situations involving a child with fragile X syndrome. With the holidays only weeks away, we thought this was good, timely advice to share... » FULL ARTICLE

    Posted on December 11, 2014 | Categories : Support and Resources | 2 Comments
  • Eight Years of Hard Work by Advocates, One Step Closer to Reality Today the U.S. House of Representatives passed the Achieving A Better Life Experience Act. NFXF advocates have been urging their members of Congress to pass ABLE since 2006. The act establishes ABLE accounts that allow individuals with disabilities and their families to save for future expenses in much the same way that others can save for college through a 529 saving plan. "This is a significant step forward for individuals living with Fragile X and their families. ABLE accounts will encourage... » FULL ARTICLE

    Posted on December 3, 2014 | Categories : Advocacy | 18 Comments
  • Researchers at the University of Michigan are looking for fathers of children with fragile X syndrome to participate in a survey about their parenting experiences. Previous research has focused on how moms cope. This time, we want to hear from dads! To participate you must be 18 years or older, male, and a parent (biological or adoptive) of at least one child with fragile X syndrome. If you choose to participate in this study, you will be helping us better understand dads’ experiences with FXS and... » FULL ARTICLE

    Posted on November 28, 2014 | Categories : Opportunities for families | 0 Comment
  • The future of Fragile X research depends on inspiring and encouraging new generations of researchers to push Fragile X forward. That’s why we offer the annual William & Enid Rosen Summer Student Fellowship, which assists young researchers in their pursuit to study Fragile X. Today, we’re proud to announce the four summaries of this year’s award recipients. A Controlled Trial of Sertraline in Young Children with Fragile X Syndrome Salpi Siyahian University of California, Davis Mentor: Dr. Randi Hagerman I had the honor of working at the UC Davis MIND Institute as a... » FULL ARTICLE

    Posted on November 26, 2014 | Categories : News Reports and Commentaries,Summer Student Fellowship | 0 Comment
  • A client asks: “Why does my child cry when people sing ‘Happy Birthday’ to her?” Many years ago when I first heard this from a parent of a girl with a full mutation, I thought it was rather strange and perhaps something unique to this child’s behavioral repertoire. Later, after meeting other families of children living with fragile X syndrome (FXS), I learned this was not an anomaly, but quite common. Why would hearing “Happy Birthday” provoke such a strong reaction? The answer is really quite simple. Children with... » FULL ARTICLE

    Posted on November 25, 2014 | Categories : Treatment and Intervention | 2 Comments
  • We’re really close! The Achieving a Better Life Experience (ABLE) Act needs to come up for a vote this year. If it doesn't, we are back to where we started. We need your help! All you need to do is make four easy phone calls, tweets and posts to help ensure ABLE gets scheduled for a vote this year! Contact the people below and talk to them using the message points provided. Phone Call Message Points 202-224-2158 I’m calling to thank Senator Reid for being a cosponsor of the ABLE Act. Now... » FULL ARTICLE

    Posted on November 24, 2014 | Categories : 2014,2015 | 36 Comments
  • A couple of years ago my son, Ian, fell and fractured his hip. It happened when he was on the freshman football team - at an away game while he was running towards the field with his team mates. Not realizing where the grass turned to concrete, he fell. Hard. Ian’s feet went out from under him and the coach said Ian flew up into the air about three feet and landed directly on his hip. Ouch. His high pain tolerance (“Mom, it hurts!”), the trip to the emergency room, and his... » FULL ARTICLE

    Posted on November 20, 2014 | Categories : Treatment and Intervention | 8 Comments
  • Neuroimmunology is a relatively new field at the intersection of neuroscience and immunology. Its purpose is to describe how immune function affects brain development and function, and how signaling between cells in the brain affect levels of pro- or anti-inflammatory signaling molecules, such as cytokines, in the rest of the body. Recent studies in this field have noted associations between maternal infections before birth or during infancy with increased risk for diseases later in life. A recent study by Milo Careaga, PhD and colleagues at the... » FULL ARTICLE

    Posted on November 13, 2014 | Categories : News Reports and Commentaries | 0 Comment
  • We are interested in learning if a behavioral treatment called Parent- Implemented Language Intervention will support spoken language development in boys with fragile X syndrome (FXS). This study might be a good fit for you if: You are the mother of a 10-17 year old son with fragile X syndrome. Your native language is English. Your son uses phrases of 2-3 words or longer. If you decide to take part in the study: You and your son would need to come to the MIND Institute for 2 visits,... » FULL ARTICLE

    Posted on November 10, 2014 | Categories : Opportunities for families | 2 Comments
  • 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 | 4 Comments
  • 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 | 7 Comments
  • This research seeks to understand how protein formation in the brain is affected in fragile X syndrome (FXS). Researchers will measure the rate at which the brain makes proteins (protein synthesis) and will identify specific parts of the brain affected in FXS. In the future, measurement of protein synthesis in FXS may help us to develop and test new therapies. The study enrolls eligible young men with FXS, ages 18-24, from around the world, and includes: One visit, lasting several days, to the NIH Clinical Center, in Bethesda, Maryland. Assessment by physicians Blood draw, Two brain scans (PET & MRI), possible sedation Travel, food, and... » FULL ARTICLE

    Posted on October 26, 2014 | Categories : Opportunities for families | 0 Comment
  • 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
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