Fragile X News

  • It was late summer and Ian was 18 years old and he was getting ready to start the Transition Program at his high school. I had to figure out how to make this work. The Transition Program is what is offered in our school district for students 18-21 years old, after they graduate from high school. » FULL ARTICLE

    Posted on February 3, 2016 | Categories : Treatment and Intervention | 11 Comments
  • If you have a son with fragile X syndrome between 36 and 66 months of age, you and your child are invited to participate in a research study being conducted by Dr. Angela Thurman from the Laboratory on Language Development in Neurodevelopmental Disorders at the MIND Institute University of California, Davis. Study Goals The goal of this study is to learn more about the factors influencing language learning in boys with fragile X syndrome. In the future, it is possible that this information will help us... » FULL ARTICLE

    Posted on January 11, 2016 | Categories : Opportunities for families | 3 Comments
  • For those interested in presenting at the 15th International Fragile X Conference, Presentations are now being accepted. The Call for Presentations will stay open until midnight Eastern Time on February 17, 2016. The conference is to be held July 20-24, 2016, in San Antonio, Texas! All Presentations will be reviewed and scored by at least three Fragile X professionals and/or Conference Advisors. The Conference Committee will choose whether a presentation will be an oral presentation (solo or shared session) or a poster. Sessions at the conference are 75 minutes in length. Information You... » FULL ARTICLE

    Posted on January 11, 2016 | Categories : 2016,International Fragile X Conference | 0 Comment
  • Date: Thursday, January 14, 2016 Time: 8:00 PM Eastern / 7:00 PM Central 6:00 PM Mountain / 5:00 PM Pacific Description Licensed Marriage and Family Therapist Diane Simon Smith will discuss the amount of stress that is often placed upon a marriage when a couple has a child (or children) with fragile X syndrome. Many parents may worry that even the strongest marriages may buckle – or worse – under the intense demand of raising a child with special needs. Some of the issues that will be addressed in this discussion will be communication breakdown, differing expectations... » FULL ARTICLE

    Posted on December 18, 2015 | Categories : Let's Talk Webinar | 4 Comments
  • Today, Congressional leaders released the text of the omnibus spending bill that will be debated and hopefully passed before Congress adjourns for the year. The omnibus bill funds all 12 appropriations bills, including THE one which provides funds for CDC and NIH for fiscal year 2016. The omnibus spending bill provides $32.1 billion for NIH, a $2 billion (6.6 percent) increase. These funds are not earmarked to any specific condition but we will continue to push for growth in the Fragile X research portfolio at NICHD, NIMH, NINDS and other NIH agencies. At the CDC’s NCBDDD, the bill does provide for... » FULL ARTICLE

    Posted on December 16, 2015 | Categories : Advocacy,Advocacy Day | 0 Comment
  • The last two years have been tough for Fragile X (FX) research. Many of us in the greater Fragile X community believed that drugs capable of reversing the core symptoms of FX were sitting on the shelf, waiting for consumers eager to improve the quality of their lives. It seemed that all we needed was to complete the drug trials and wait for our physicians to write the prescriptions. And why not? Virtually every mouse and fruit fly that took these drugs experienced... » FULL ARTICLE

    Posted on December 10, 2015 | Categories : FXS,Keeping You Informed,News Reports and Commentaries | 7 Comments
  • I was honored to have been invited to represent the Fragile X community and the NFXF at the recent meeting sponsored by Neuren Pharmaceuticals, in which they shared some very encouraging news regarding their Phase 2 clinical trial. From my perspective, it’s encouraging to know that there’s a pharmaceutical company still working in FX, the drug is successfully progressing through the typical stages required for FDA approval and we are all hopeful that the news remains positive. For more details, please read the press release issued by Neuren. The announcement is lengthy... » FULL ARTICLE

    Posted on December 7, 2015 | Categories : FXS,In the News,News Reports and Commentaries | 4 Comments
  • The NFXF is a participating member of the ABLE National Resource Center On Friday November 20, 2105 the US Department of Treasury and the IRS released interim guidance regarding the Stephen Beck Jr, Achieving a Better Life Experience (ABLE) Act. The interim guidance addresses several concerns expressed in the public comment period in reference to sections of the ABLE Notice of Purposed Rule Making (NPRM) released this past June. The requirements addressed are those which: Establish safeguards to categorize distributions from ABLE accounts; Request the taxpayer identification number (TIN) of each contributor to... » FULL ARTICLE

    Posted on December 3, 2015 | Categories : Advocacy Day | 0 Comment
  • One of the most prevailing fears for a couple when their child has a disability is that their marriage will be affected; perhaps it will likely end. In fact, one of the things couples are told is 80% of them will be divorced because of the child. This is a statistic that has been debunked by Kennedy Krieger Institute. When couples tell me this statistic, I also tell them it is not my experience with couples who are parents of children with disabilities. However, it important to recognize... » FULL ARTICLE

    Posted on November 16, 2015 | Categories : FXS,FXTAS,Support and Resources | 3 Comments
  • Dear Families, You are invited to take part in a fragile X syndrome (FXS) study for racial and ethnic minority children and families by taking an online survey. The researcher, Georgianna Baker-Gay, is a Public Health doctoral student at Capella University. In partial fulfillment of the requirements for the Degree Doctor of Public Health, the researcher has chosen to examine the needs of FXS racial and ethnic minority children and families. The purpose of the study is to create a racial and ethnic minority Fragile X awareness and education program intended to improve identification and management of FXS... » FULL ARTICLE

    Posted on November 13, 2015 | Categories : Opportunities for families | 0 Comment
  • .sticky-element-fixed { padding-top: 45px; border-bottom: 2px solid #ccc;} A Message | Our Mission | Community Support Network | Let 'Em Know 5K | NFXF Advocacy Day | International Fragile X Conference | Membership | Financials | Xcepional Donors | ... » FULL ARTICLE

    Posted on November 6, 2015 | Categories : Annual Report | 0 Comment
  • Purpose of Study To better understand the emotional experiences and experiences with support systems of mothers who are carriers of fragile X syndrome and have had a child diagnosed in the first three years of life. Determine if there is a change in emotional intensity or a change in the types of support available and utilized by mothers before versus after a child is diagnosed with fragile X syndrome. Determine if there is a correlation between emotional intensity and types of support utilized before and after a child... » FULL ARTICLE

    Posted on October 28, 2015 | Categories : Opportunities for families | 0 Comment
  • For the last 11 years on , our Fragile X advocates have visited their Members of Congress (MOC) in Washington, DC, and produced incredible results – like NIH’s yearly expenditure of nearly $30 million for Fragile X research, the passage of the and more. After such success on a national level, the next step for continued growth was a local advocacy program. We introduce to you an exciting expansion of the NFXF’s advocacy activities: The STAR Initiative. Currently in its pilot stage, the... » FULL ARTICLE

    Posted on October 23, 2015 | Categories : Advocacy,STAR Initiative | 0 Comment
  • After eight long years urging passage by the US House and Senate, the ABLE Act was signed into law by President Obama in December of 2014. But ten months later, no one has been able to open an ABLE Account. Why is that, and when will we be able to do so? As they say: “These things take time.” The IRS Code and Final Regulations The act was ultimately enacted as an amendment to the Internal Revenue Service Code. The IRS Code is where the entitlement to open a college savings-529 plan... » FULL ARTICLE

    Posted on October 15, 2015 | Categories : Advocacy | 1 Comment
  • On September 25 to 27, 58 leaders visited St. Louis, Missouri, for the National Fragile X Foundation’s second biennial CSN Leadership Summit. The CSN is the national volunteer program of the NFXF, comprised of groups typically organized and run by parent volunteers. The CSN provides emotional and educational support to families and individuals living with Fragile X. CSN groups organize events that offer support and build awareness for Fragile X in their local communities. At the summit, CSN group leaders attended sessions to enhance their leadership skills and collaborate to better serve their local families... » FULL ARTICLE

    Posted on October 8, 2015 | Categories : Community Support Network | 0 Comment
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