Fragile X News

  • We are pleased to announce the addition of Dan Whiting to the NFXF team as Director of Communications and Government Relations. With over 19 years of experience in public policy, communications and marketing, including 11 years on the legislative and communications staff for a US Senator, Dan possesses a unique perspective and understanding of how we can best position the NFXF for growth in order to better deliver on our mission of driving research, creating awareness and providing unwavering support to everyone living with Fragile X. We are excited about the depth and breadth of experience that Dan will add to our... » FULL ARTICLE

    Posted on February 18, 2017 | Categories : Foundation,Keeping You Informed | Comments Off on Special Announcement about Communications and Government Affairs
  • With the support of their community, NFXF board members and outstanding CSN leadership, Greater Atlanta Fragile X hosted an amazingly successful Brew Fest event for the second year in a row. » FULL ARTICLE

    Posted on February 17, 2017 | Categories : Community Support Network,Greater Atlanta | Comments Off on Greater Atlanta Hosts Incredibly Successful Brew Fest
  • What happens when you combine friendly competition and a campaign to raise awareness of Fragile X? Tremendous success! Western Massachusetts participated in the 2nd annual Hadley Cornhole Championship, raising awareness and over $1100 for NFXF! » FULL ARTICLE

    Posted on February 17, 2017 | Categories : Community Support Network,Western Massachusetts | Comments Off on Local Tournament Raises over $1100 for NFXF
  • Fragile X DNA analysis is one of the most commonly ordered medical genetic tests. It is recommended as a standard part of the genetic work-up of children with developmental delay, autism or intellectual disability. Adult neurologists and reproductive specialists increasingly recommend Fragile X testing, as awareness has grown about fragile X-associated Tremor Ataxia Syndrome (FXTAS) and fragile X-associated Primary Ovarian Insufficiency (FXPOI). Fragile X carrier testing during pregnancy has also become relatively commonplace in the US and elsewhere, even for women without a family history suspicious for Fragile X disorders. » FULL ARTICLE

    Posted on February 15, 2017 | Categories : Genetics | Comments Off on Understanding a Fragile X Intermediate Result
  • There are two things we would like for you to do before you come to the training in Washington, DC. » FULL ARTICLE

    Posted on February 10, 2017 | Categories : Advocacy Day | Comments Off on NFXF Advocacy Day Homework
  • Dealing with critical incidents is very important for caregivers of individuals with fragile X syndrome (FXS), particularly biological mothers. Unfortunately, critical incidents occur frequently for many caregivers of children with FXS. Behavioral outbursts and aggression are critical incidents that take place in the home or in the community. For biological mothers of children with FXS who carry the premutation gene, there is the added predisposition to anxiety, as well as other emotional concerns (Coleman & Riley, 2014), which can amplify their response to these critical incidents. » FULL ARTICLE

    Posted on February 9, 2017 | Categories : Carriers | Comments Off on Critical Incident Management for Mothers of Children with Fragile X Syndrome
  • It's always fun with moms get together and share stories and good times! » FULL ARTICLE

    Posted on February 9, 2017 | Categories : Central Connecticut,Event,Western Massachusetts | Comments Off on Moms’ Night out with Connecticut and Western MA
  • After eight years of dedicated service, Diane Southard stepped down at president. We gathered as a group to celebrate her accomplishments and formally welcome Sara Hamilton into the role! » FULL ARTICLE

    Posted on February 9, 2017 | Categories : Event,St. Louis | Comments Off on Change of Command Celebration for Missouri
  • Posted on February 9, 2017 | Categories : Event,Southeast Pennsylvania | Comments Off on Moms’ Night Out with Southeastern Pennsylvania
  • In preparation for the National Fragile X Foundation's Advocacy Day 2017, we are publishing initial details on our "asks" for this year's meetings. It is our goal to provide each advocate ample time to prepare, in an effort to ease anxiety related to the day. Our asks, as always, are bipartisan and reflect the best interests of our community. Personal politics have no place in Advocacy Day so we hope each of you will come to Washington, DC prepared to share your story and fight for the needs of all those living with Fragile X. » FULL ARTICLE

    Posted on February 9, 2017 | Categories : Advocacy Day | Comments Off on The ‘Asks’ for NFXFAD2017
  • FOR IMMEDIATE RELEASE Tony Ferlanda, CEO 315-382-1090 tony@fragilex.org fragilex.org Accelerating Research into Treatments and Cures of Leading Inherited Cause of Intellectual Disability Washington, DC (February 6, 2017) – The National Fragile X Foundation (NFXF) announces the launch of the NFXF Biobank™, the first major project of the NFXF Collaborative Biomarker Research Program. This initiative will drive faster and more efficient research into treatments and a cure for fragile X syndrome, the leading inherited cause of intellectual disability and the leading known single gene cause of autism. Biological samples will be collected from volunteer participants from the Fragile X... » FULL ARTICLE

    Posted on February 6, 2017 | Categories : Press Release | Comments Off on National Fragile X Foundation Launches NFXF Biobank™
  • The 115th Congress is just getting underway and there is no better time to start making new friends. One of the best ways to do that is by attending the 14th annual NFXF Advocacy Day coming up on February 28 and March 1st. We need both seasoned advocates and first timers to share the load. NFXF advocates have consistently proven that participating in the process, telling your stories and making your voices heard makes all the difference in the world. » FULL ARTICLE

    Posted on February 2, 2017 | Categories : Advocacy | Comments Off on Fragile X Family Ties Run Deeper Than Party Lines
  • Finding the most effective interventions for students with fragile X syndrome (FXS) can be difficult and often results in a “trial and error” approach. Even though a number of strategies have emerged and have been documented in the literature, the evidence-based interventions are limited. Promising outcomes are continuing to develop using the cognitive phenotype to better understand how to best teach students with FXS. » FULL ARTICLE

    Posted on February 1, 2017 | Categories : Education | Comments Off on Best Practice in Educational Strategies and Curricula
  • The Individualized Education Program, also called the IEP, is a document that is developed for each public school child who needs special education. The IEP is created through a team effort, reviewed periodically. Learn how to best advocate for your child and work with her/his instructors to get the best education. » FULL ARTICLE

    Posted on January 24, 2017 | Categories : Webinar | Comments Off on Webinar: Individualized Education Programs with Dr. Vicki Sudhalter
  • Dr. Wendy Machalicek, BCBA-D at the University of Oregon, is recruiting families of boys with FXS, ages two to four years of age, who engage in challenging behavior such as aggression, self-injury or other disruptive behavior, to participate in a study evaluating behavioral interventions to decrease challenging behavior and improve family quality of life. » FULL ARTICLE

    Posted on January 24, 2017 | Categories : Opportunities for families,Research | Comments Off on Challenging Behavior in Two-to Four-Year-Old Boys with FXS
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