Fragile X News

  • 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 | 0 Comment
  • 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
  • This project was funded by a CDC cooperative agreement with Dr. Ted Brown (#1U19DD000753-01). Disclaimer: The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the CDC. FORWARD stands for Fragile X Online Registry With Accessible Research Database. It is a project funded by the Centers for Disease Control and Prevention (CDC) that collects data on people with fragile X syndrome (FXS) who attend one of the 27 clinics around the country that are part of the [link id='2303'... » FULL ARTICLE

    Posted on August 15, 2014 | Categories : FXCRC and Clinics | 0 Comment
  • It's beginning to feel like both the scientific world and the rest of the world are coming around to the idea (a fact, really) that Fragile X is about a lot more than just fragile X syndrome. Our community knows that it's about and , too - but we’re also discovering the and are so significant that once there's any mutation in the FMR1 gene, there are health impacts. Whether it's cognitive, emotional, physical, very mild or very significant, when... » FULL ARTICLE

    Posted on August 12, 2014 | Categories : Keeping You Informed,News Reports and Commentaries | 1 Comment
  • We can't thank our sponsors enough for making our conference the best ever! Sponsors Platinum Silver Bronze ... » FULL ARTICLE

    Posted on August 7, 2014 | Categories : 2014 | 0 Comment
  • The National Fragile X Foundation is saddened to learn of the death of Jarrod Tutko Jr., an 8-year-old boy from Harrisburg, Penn., who was living with fragile X syndrome. The Fragile X community mourns the loss of one of our own. Our thoughts and prayers go out to his family and friends. Although this is a tragic loss, we would like to share with the public this is an isolated incident and not reflective or representative of the vast majority of... » FULL ARTICLE

    Posted on August 4, 2014 | Categories : Keeping You Informed | 0 Comment
  • On July 16, 2014, Christine Iwahashi, a research biochemist for more than 30 years at , died of recurrent breast cancer at the age of 58. Since 2001, she has dedicated her life to understanding the causes of disorders related to the Fragile X gene. Ms. Iwahashi obtained her biochemistry degree from UC Davis in 1976, followed by a three-year period of research at Stanford University prior to her return to UC Davis as a staff research biochemist. In addition to her career in research, she... » FULL ARTICLE

    Posted on July 29, 2014 | Categories : FXCRC and Clinics | 1 Comment
  • Taylor was born September 6, 2003. She was perfect. She met all her milestones right on time, spoke early, and knew complicated shapes like a pentagon before she even could speak. Taylor was, however, very shy in the presence of new people. She would get so excited at the littlest things and flap her hands very fast. We thought she'd be a terrific drummer! Taylor never liked praise and would cry if you congratulated her too loudly. All around, though, we never suspected anything was wrong. ... » FULL ARTICLE

    Posted on July 28, 2014 | Categories : Hope & Inspiration | 0 Comment
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