Fragile X News

  • Reposted from NFXF Quarterly, President’s Note, Issue #44, March 2012 How did I wind up here? Eight short years ago I had never heard of Fragile X, let alone CGG repeats, carriers, and mGluR theory. As I settle (humbly) into my term as President of the Board of Directors of the National Fragile X Foundation, I find myself spending considerable time thinking of how all of those fit together— not to mention how I got here. The short answer is simple: Christy and Kenney…the two Daddy’s girls in my life living with Fragile... » FULL ARTICLE

    Posted on October 1, 2014 | Categories : Hope & Inspiration | 0 Comment
  • Does someone you love have fragile X syndrome (FXS)? If so, please know that we are currently enrolling individuals with FXS between 15 and 55 years of age to participate in a medical research study. In this research study, we will evaluate the effects of the investigational drug Metadoxine Extended Release (MDX) on the symptoms of ADHD in individuals with Fragile X. There is no cost to participate in our research study, and compensation for time and travel may be available. To learn more about our research study, please contact: Libby Bliss, Research Manager 206-884-1488 elizabeth.bliss@seattlechildrens.org Seattle... » FULL ARTICLE

    Posted on September 30, 2014 | Categories : Opportunities for families | 0 Comment
  • ABLE Act hits all-time high 380 co-sponsors, appropriation injects $150 million into DOD and PRMRP, NFXF asked to nominate additional peer reviews to the PRMRP, Rep. Klein still refuses to allow debate on KASS, and NIH awards $35 million to Centers for Collaborative Research in Fragile X program. ABLE Act The ABLE Act set the world on fire in Congress and in the mainstream media before the congressional summer recess. There are now 380 co-sponsors... » FULL ARTICLE

    Posted on September 29, 2014 | Categories : 2015 | 0 Comment
  • Neuren Pharmaceuticals is pleased to inform you of an opportunity to participate in a clinical trial for adolescents and adults with fragile X syndrome. This clinical trial is testing an investigational medication, NNZ-2566, as a targeted treatment for fragile X syndrome (FXS).  The purpose of this study is to assess the safety and efficacy of two dose levels of NNZ-2566 when compared to placebo in adolescent and adult males (ages 14-40) who have been diagnosed with FXS.NNZ-2566 has an entirely novel mechanism of action compared with other drugs that have been... » FULL ARTICLE

    Posted on September 29, 2014 | Categories : Opportunities for families | 0 Comment
  • James Colburn was born with fragile X syndrome. At 26, he is a child at heart who finds joy in the smallest things and uses his gift of comedic timing to inspire those around him. James is living proof there is love and laughter in the face of autism and Fragile X. » FULL ARTICLE

    Posted on September 27, 2014 | Categories : Community | 0 Comment
  • Three research teams receive funding over next five years The National Institutes of Health (NIH) is making funding awards of $35 million over the next five years to support the Centers for Collaborative Research in Fragile X program. Investigators at these centers will seek to better understand Fragile X-associated Disorders and work toward developing effective treatments. “The NIH Centers for Collaborative Research in Fragile X program has produced a number of advancements that have lead us to this exciting period in Fragile X research,” said Jeffrey Cohen NFXF director of public policy... » FULL ARTICLE

    Posted on September 23, 2014 | Categories : 2014,Advocacy,In the News | 0 Comment
  • Date: Tuesday, October 7, 2014 Time: 8:00 PM Eastern / 7:00 PM Central 6:00 PM Mountain / 5:00 PM Pacific Description The world of treatment can be tough for parents and other caregivers to navigate. One of the most frequent questions they ask is, “Which medication is best for my child?” We're pleased to address this topic as part of our continuing Let’s Talk! webinar series. Returning to our webinar will be Dr. Craig Erickson, a noted Fragile X expert and medical director of the Fragile X Clinic in... » FULL ARTICLE

    Posted on September 18, 2014 | Categories : Let's Talk Webinar | 5 Comments
  • The inspirational story behind an innovative game concept that may help children with Fragile X manage transitions Ben Moelis’ connections to Justin Silver runs deep. Their sisters took swimming classes together, their families go apple picking together every fall, and they visit the waterpark together every summer. As close as they are, each boy has a few distinct differences: Ben is older than Justin by four years, and Ben doesn't live with fragile X syndrome (FXS), like Justin does. Regardless of their few difference, the boys are great friends. As Ben got... » FULL ARTICLE

    Posted on September 18, 2014 | Categories : In the News | 0 Comment
  • It is my honor and privilege to join the Fragile X community as the new CEO of the National Fragile X Foundation. Since my arrival, I have had the opportunity to witness, first-hand, what I already suspected – that this is a very special and dedicated community, filled with individuals who are passionate about making a positive difference for those living with Fragile X. I am thrilled to be here with each of you and look forward to building on the wonderful work you have accomplished through the Foundation. Over the next 90 days I... » FULL ARTICLE

    Posted on September 15, 2014 | Categories : Keeping You Informed | 0 Comment
  • We join with all of you in expressing our disappointment at learning the news of the negative phase II clinical study results from Roche. The drug under study was a metabotropic glutamate receptor subtype 5 (mGluR5) negative allosteric modulator. This means that it was designed to reverse the over-activity in this pathway that is brought about by the absence of FMRP. Roche released a statement this morning confirming the discontinuation of the study. The company has also scheduled a webcast to discuss the clinical study results for September 18, please... » FULL ARTICLE

    Posted on September 10, 2014 | Categories : Keeping You Informed | 2 Comments
  • An article on SFARI.org entitled “In fragile X syndrome, coping skills decline with age” has been making rounds with the Fragile X community on social media. In the article, author Jessica Wright draws conclusions from a Stanford study published in... » FULL ARTICLE

    Posted on September 4, 2014 | Categories : In the News,Keeping You Informed | 0 Comment
  • National Fragile X Awareness Month is a group effort. We prepare each July to unite and keep our communities informed about Fragile X, ensuring that one more doctor, one more teacher, one more neighbor knows about our cause and makes life easier for all families living with Fragile X. And we couldn't do it without you! We want to thank you for helping us raise over... » FULL ARTICLE

    Posted on September 3, 2014 | Categories : Awareness Day | 0 Comment
  • The “gray zone” allele in the gene is so named because much about it remains unknown. The color evokes an image of the middle ground between stark black and white, a mixing ground of two extremes. Or perhaps one envisions gray skies, looming and dull over the horizon. Surprisingly, the gray zone is anything but dull, and instead represents a burgeoning area of research in Fragile X-associated Disorders. An allele is a variant of a gene, and we each possess two alleles for each gene, excluding the genes that are on the sex... » FULL ARTICLE

    Posted on August 26, 2014 | Categories : Genetics,News Reports and Commentaries | 0 Comment
  • What would you like people to know about you? I've been in nonprofit leadership roles for the last 23 years — as both a volunteer, board member, and employee. Small- to mid-sized organizations with a compelling, human services mission, like the NFXF... » FULL ARTICLE

    Posted on August 19, 2014 | Categories : Foundation | 0 Comment
  • The National Fragile X Foundation (NFXF), the world’s leading advocacy organization for people affected by all Fragile X-associated Disorders, has named Tony Ferlenda as chief executive officer. » FULL ARTICLE

    Posted on August 19, 2014 | Categories : Press Release | 0 Comment
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