Fragile X News

  • Date: Monday April 13, 2015 Time: 8:00 PM Eastern / 7:00 PM Central 6:00 PM Mountain / 5:00 PM Pacific Description How is Fragile X passed on from one generation to the next? What’s the difference between premutation and gray zone? How does mosaicism fit into the Fragile X spectrum? The genetics of Fragile X is a complicated maze of terms and conditions, and we’re here to guide you. Join us for our free Let's Talk! webinar as we speak with special guest Licensed Genetic Counselor Brenda Finucane for an overview of the genetics of... » FULL ARTICLE

    Posted on March 26, 2015 | Categories : Let's Talk Webinar | 0 Comment
  • One of the best programs that I have ever seen was the Adaptive Physical Education (PE) Class that was in place when my son, Ian, was in high school. It was a wonderful program where people with and without disabilities got to know each other. The program improved the confidence in students with developmental disabilities and, maybe even more impressively, it gave typical students a chance to really see past the disability and instead see the person. Ian was based... » FULL ARTICLE

    Posted on March 24, 2015 | Categories : Treatment and Intervention | 1 Comment
  • Every March, we go to Washington, DC, for National Fragile X Foundation Advocacy Day, to advocate for Fragile X funding and important issues that will impact the future of our community. It is an incredible event that not only enlightens our Members of Congress (MOC) on Capitol Hill, but inspires our advocates to make a difference in their lives and the lives of families around the nation. The advocates who joined us in Washington were all volunteers, who spent their own valuable time and money to speak on behalf of... » FULL ARTICLE

    Posted on March 16, 2015 | Categories : 2015 | 0 Comment
  • Participate in Fragile X research from anywhere! This research study is looking at the relationship between sensory processing skills (response to sensory experiences) and the development of daily life skills (adaptive skills). The goal of this research study is to find out more information about what daily living skills children with Fragile X are developing as they grow up, and how their ability to process sensory experiences contributes to their performance and behavior. Who can participate? Parents who have a child with full mutation Fragile X. Child... » FULL ARTICLE

    Posted on March 9, 2015 | Categories : Opportunities for families | 2 Comments
  • The Carolina Institute for Developmental Disabilities (CIDD) at the University of North Carolina at Chapel Hill and the Center for Interdisciplinary Brain Sciences Research (CIBSR) at Stanford University would like to inform you of an exciting new research project involving families who have a child diagnosed with fragile X syndrome. This innovative, five-year, NIMH funded research project was awarded $5 million in funding in the fall of 2012 and the study is now underway. The... » FULL ARTICLE

    Posted on March 8, 2015 | Categories : Opportunities for families | 0 Comment
  • 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 | 2 Comments
  • 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
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