Fragile X News

  • Flags were flying and the crowds were jumping as (contained) mice ran their races at the 11th Annual Mouse Races to Support the Fragile X Resource Center of Missouri. » FULL ARTICLE

    Posted on October 21, 2016 | Categories : Event,St. Louis Events | Comments Off on 11th Annual Mouse Races with Fragile X Resource Center of Missouri
  • On Saturday, October 15th the Fragile X Families of Phoenix CSN hosted its 3rd Annual Phoenix Fragile X Awareness Walk. » FULL ARTICLE

    Posted on October 21, 2016 | Categories : Phoenix | Comments Off on 3rd Annual Phoenix Fragile X Awareness Walk
  • Language is critical in much of daily life. Making friends, learning in school and holding down a job, all require language. For people with more limited language, like so many with fragile X syndrome (FXS), researchers and clinicians are trying to figure out ways of improving language so that inclusion in more of life’s activities will be possible. » FULL ARTICLE

    Posted on October 19, 2016 | Categories : Research | Comments Off on Language Challenges and Language Possibilities for Fragile X Syndrome
  • On October 2nd, Western Massachusetts Fragile X partnered with Four Season's and Esselon Cafe to hose a wine tasting event, benefitting Fragile X. » FULL ARTICLE

    Posted on October 14, 2016 | Categories : Western Massachusetts | Comments Off on Western Mass Fragile X Wine Tasting Fundraiser
  • Can you believe your child is starting high school? I know, they were just a toddler yesterday. As you begin this important part of your journey, remember the specifics of this information varies by state, school district and even by school. You know your child best so you want to set up services that work for your child. I tried to cover all aspects for all children with all their varying abilities so some of these items may not apply to you. This might look overwhelming, but if you take it one step at a time, you’ll do great! » FULL ARTICLE

    Posted on October 12, 2016 | Categories : Education | Comments Off on Ten Things to Do When Your Child Starts High School
  • It is common for individuals with fragile X syndrome to remove themselves from stimulating situations in order to allow for time alone and the self-preservation that flows from it. The fact that people with FXS can self-advocate in this way is compelling. The process of recognizing when one’s own sensory system can no longer tolerate a certain level of input is called regulation. It is a skill that we actively teach younger children with FXS. » FULL ARTICLE

    Posted on October 5, 2016 | Categories : Braden on Behavior | Comments Off on When Disappearing Acts Are A Good Thing
  • Behavior management is always a high priority to parents and professionals who support individuals with fragile X syndrome. Understanding the etiology of behavior in people with FXS is critical when creating proactive strategies to successfully manage that behavior. Knowing the triggers and manipulating the environment can often succeed in preventing the person with FXS from engaging in problem behavior. » FULL ARTICLE

    Posted on September 28, 2016 | Categories : Braden on Behavior | 5 Comments
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    Posted on September 22, 2016 | Categories : Let's Talk Webinar | 1 Comment
  • For those who were unable to attend our 2016 NFXF International Fragile X Conference, we are opening up the website which contains PDF files of handouts from the Conference. Read on for instructions. » FULL ARTICLE

    Posted on September 21, 2016 | Categories : 2016,International Fragile X Conference | Comments Off on Access to Conference Handouts
  • On September 12, 2016, Western Massachusetts Fragile X hosted an educational event in collaboration with Dr. Joel Richter of Mass Medical School. Approximately 140 first-year medical students attended this event that highlighted Dr. Richter's research into fragile X syndrome. » FULL ARTICLE

    Posted on September 16, 2016 | Categories : Western Massachusetts | Comments Off on Principles of Human Genetics, Clinical & Ethical Correlation: Fragile X
  • Many children with fragile X syndrome struggle with feeding issues, ranging from over-stuffing to picky eating. Mealtime can become stressful for families if these feeding problems exist. This article highlights some common feeding difficulties that individuals with Fragile X struggle with and suggests some strategies to make mealtime more successful for your family. » FULL ARTICLE

    Posted on September 14, 2016 | Categories : Treatment and Intervention | 2 Comments
  • It was just an ordinary day with ordinary classes and ordinary people. I walked home from school that afternoon and sat in the same old squeaky, annoying living room chair I sit in every day. Little did I know that day, my life, as I knew it, would never be the same again. I can’t tell you the exact date or what else happened that day, but I do remember that was the day I found out I had something called Fragile X. What does that mean to an 11 year old girl? Nothing, I tell you. » FULL ARTICLE

    Posted on September 13, 2016 | Categories : FXS | 1 Comment
  • The purpose of this study is to explore parent perceptions of clinician-client relationships in speech-language treatment for children. We believe that the development of collaborative working relationships between speech-language pathologists, children receiving treatment, and their parents are important aspects of the treatment process. We are working to develop tools to accurately measure the strength of these relationships. » FULL ARTICLE

    Posted on September 12, 2016 | Categories : Opportunities for families,Research | Comments Off on Parent Perspectives on Rapport in Speech-Language Treatment for Children
  • The Center for Child Development at Vanderbilt University Medical Center and the Monroe Carell Jr. Children’s Hospital at Vanderbilt are proud to announce the opening of the Vanderbilt Fragile X Clinic. The goal of the clinic is to provide a comprehensive clinical services that are tailored to the needs of individuals with fragile X syndrome (FXS) and their families. The Vanderbilt Fragile X Clinic is a member of the Fragile X Clinical and Research Consortium (FXCRC), which is supported by the National Fragile X Foundation. » FULL ARTICLE

    Posted on September 8, 2016 | Categories : FXCRC and Clinics | 1 Comment
  • Heartland Fragile X hosted their first Bike Out Fragile X event, and it was tremendous success! » FULL ARTICLE

    Posted on September 8, 2016 | Categories : Heartland | Comments Off on Heartland Fragile X Hosts Bike Out Event
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