Fragile X News

  • 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 | 0 Comment
  • 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 | 20 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
  • 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
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