Fragile X News

  • At the age of 18, children become legal adults, which means that you – as a parent – are no longer your child’s legal guardian, even if they have Fragile X. In order to continue helping your child take care of his or her self, make decisions in your child’s own best interests and handle their assets, you have to initiate a process of assuming legal guardianship of your child. » FULL ARTICLE

    Posted on May 25, 2016 | Categories : Adults,FXS | 3 Comments
  • Most children who come to see me have a combination of developmental delays, communication challenges and symptoms of anxiety, resulting in frequent tantrums. It is common for parents to share details about their daily struggles. The familiar patterns are that their children often have meltdowns during transitions, aggressive behaviors during tantrums or panic-like symptoms in new or unexpected situations. Over time, parents begin to worry about how they will manage these behaviors or what others will say or think. I often see a pattern develop where parents can anticipate when difficult behaviors will emerge for their children, and they try » FULL ARTICLE

    Posted on May 20, 2016 | Categories : Behavior,Treatment and Intervention | 3 Comments
  • Family caregivers play a critical role in managing the needs of individuals with FXTAS throughout the course of the illness. People with FXTAS rely on caregivers for a wide range of support—preparation of meals, household chores, transportation, medications, bathing, dressing, feeding, physical, emotional and social care, and managing family money. » FULL ARTICLE

    Posted on May 11, 2016 | Categories : FXTAS | 0 Comment
  • Little is known about the early psychosocial and family development of young children with neurodevelopmental disorders. The goal of this study is to partner with families affected by these conditions to better understand children’s individualized strengths and needs. » FULL ARTICLE

    Posted on May 6, 2016 | Categories : Opportunities for families,Research | 0 Comment
  • Anyone who lives with a person with Fragile X is very familiar with this continuation of a repeated word or phrase. This repetition can be maddening when you are the recipient. At face value, perseveration has no redeeming features and simply serves as an irritant, but in the life of one with fragile X syndrome (FXS), it can be a valuable asset. Perseverative verbiage often accompanies arousal and acts as a buffer to reduce the anxiety. The repetition can be comforting like a mantra or song. » FULL ARTICLE

    Posted on April 28, 2016 | Categories : FXS | 9 Comments
  • Now Recruiting Research Participants: Combining Lovastatin and a Parent-Implemented Language Intervention in a Multimodal Treatment for fragile X syndrome We invite you to take part in a research study to test the efficacy of a multimodal treatment comprised of the medication Lovastatin or placebo, and a Parent-Implemented Language Intervention (PILI) in children and adolescents with FXS. Who Can Participate? Children and adolescents between the ages of 10-17 diagnosed with fragile X syndrome. Participants must be able to speak in at least two to three word phrases... » FULL ARTICLE

    Posted on April 20, 2016 | Categories : Research | 2 Comments
  • In 2014, Sarah Moelis and her brother, Ben, exhibited "The Magic Arrows," a game that Sarah, Ben, Hailey Silver and J.D. Gebbia invented. The game helps children with fragile X syndrome organize their daily activities, easing the anxiety often triggered by transitioning from one activity to another. Sarah is on-course to unveil the commercial release of "The Magic Arrows" app before the start of conference. Sarah is looking for volunteer families who are part of the Fragile X community to be part of a limited test group this June. Volunteers will use the 1.0 version of the app and provide » FULL ARTICLE

    Posted on April 19, 2016 | Categories : FXS,Technology | 3 Comments
  • In 2005, the UC Davis MIND Institute and the National Fragile X Foundation (NFXF) were contacted by Sergio Villada of the Special Kids Foundation in Florida. Sergio was in Colombia making a documentary about a relative with fragile X syndrome (FXS). While filming, he had heard of a small agricultural town called Ricaurte that had a high preponderance of people with intellectual disability. Sergio also knew researchers from the Universidad del Valle had done preliminary cytogenetic studies to document Fragile X in several families in Colombia. As a result of Sergio’s efforts, in the fall of 2013, Dr. Randi Hagerman » FULL ARTICLE

    Posted on April 15, 2016 | Categories : Research | 11 Comments
  • In March of 2015, as I crossed the finish line of my last marathon, I said to anyone who could hear me, “I WILL NEVER DO THAT AGAIN!” It took my body a week to recover so that stairs were no longer my nemesis. Despite the previous proclamation, I will be running one more marathon on April 24, 2016. Am I crazy? Possibly, but people change their minds all of the time. What caused me to reverse my thinking? I’ll get to that in a... » FULL ARTICLE

    Posted on April 6, 2016 | Categories : Annoucements | 0 Comment
  • When parents first learn about Fragile X, their primary focus is on the meaning of the diagnosis for their child with the syndrome. Once the dust settles though, they begin to think about the genetic implications for other family members, and in particular, for typically developing siblings who may or may not carry a Fragile X mutation. » FULL ARTICLE

    Posted on March 30, 2016 | Categories : FXS | 1 Comment
  • On March 2-3, 2016 the NFXF held its 13th Annual Advocacy Day in Washington, D.C. It was a resounding success was attended by 150 advocates from 30 states. This included a record number of siblings and self-advocates who have rapidly become some of the most enthusiastic and impactful advocates for Fragile X. » FULL ARTICLE

    Posted on March 24, 2016 | Categories : 2016,Advocacy | 2 Comments
  • 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. » FULL ARTICLE

    Posted on March 17, 2016 | Categories : Let's Talk Webinar | 1 Comment
  • (Berlin/Sacramento) The International Fragile X Alliance (IFXA), a global network of Fragile X parent support organizations, was launched on February 29, 2016. IFXA will work to improve the life situation of people with the most common inherited form of intellectual disability, Fragile X Syndrome, as well as other Fragile X-associated Disorders. » FULL ARTICLE

    Posted on March 16, 2016 | Categories : Press Release | 4 Comments
  • NFXF Advocacy Day is a two-day event. March 1 -- 1 PM – 5 PM: Training for what to expect and do when you go onto Capitol Hill the following day. March 2 -- 6:30 AM – 5 PM: Capitol Hill visits. There are two things we would like for you to do before you come to the training in Washington, DC. Prepare a handout to give to your Members of Congress (MOC) or their staffer (whom you will most likely meet). Here are examples of what we mean by handout – and it should include your name and a way to contact... » FULL ARTICLE

    Posted on February 16, 2016 | Categories : 2016,Advocacy Day | 0 Comment
  • A concern many parents have for their children is whether or not their children will be able move out of the house and to live on their own. The process that mother and CSN leader Anita Inz went through was a difficult challenge, but now her son lives happily in an independent living community with support. She joins us for our upcoming webinar to talk about her experience and her son’s’ current living situation, to help give you an idea of how to navigate the world of independent living. » FULL ARTICLE

    Posted on February 8, 2016 | Categories : Let's Talk Webinar | 0 Comment
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