Fragile X News

  • Date: Wednesday, February 18, 2015 Time: 8:00 PM Eastern / 7:00 PM Central 6:00 PM Mountain / 5:00 PM Pacific Description The demands of parenting an older child or young adult with special needs are quite distinct from earlier stages. While special needs require accommodations, the potential youngsters have to contribute to family life, exercise choice and take on increased responsibility needs to be encouraged and nurtured to bring out the best of their capabilities. Becoming familiar with the type of supports available and how to access them should start no later than... » FULL ARTICLE

    Posted on January 30, 2015 | Categories : Event,Let's Talk Webinar | 1 Comment
  • Katie Couric and her news team contacted us about featuring Fragile X on Yahoo News with Katie Couric. We’re excited to announce that they will be airing the piece soon! The news piece features interviews with NFXF Co-Founder Dr. Randi Hagerman, NFXF Board member Brain Silver and his wife Shari... » FULL ARTICLE

    Posted on January 13, 2015 | Categories : In the News | 17 Comments
  • The National Fragile X Foundation is closing the doors to our brick and mortar office, and our new mailing address will be located in Washington, DC. So please, update your address books! The biggest reason for this change is to allow us to divert more of your generous donations to serve the Fragile X community by saving on rental space and equipment. Rest assured that we are still the same organization that you know and support. The only big difference is that the work is being done from home offices instead of an office building. Many of our team members have already... » FULL ARTICLE

    Posted on January 12, 2015 | Categories : Annoucements | 1 Comment
  • On December 19, 2014 the ABLE Act was signed into law by President Obama. ABLE was truly bipartisan, and had overwhelming support from both sides of the aisle in the House and Senate. Now that it has become the law of the land, what does it mean for individuals with disabilities? What is the ABLE ACT? The ABLE Act is a new law that  amends the Internal Revenue Code to allow individuals with disabilities, like Fragile X, and their families to save money in ABLE Accounts. The money saved in an ABLE Account is not... » FULL ARTICLE

    Posted on January 2, 2015 | Categories : 2015,Advocacy Day,Keeping You Informed | 10 Comments
  • 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
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