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.
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The National Fragile X Foundation is co-hosting National Achieving a Better Life Experience (ABLE) Act Call-In Day on Wednesday, April 25, along with Autism Speaks, National Down Syndrome Society, Muscular Dystrophy Association, NDSC, and several »
Sophia James, a top 10 finalist in the latest season of American Idol, talks about being a sibling of her brother James, who has Fragile X syndrome. You can view the video or read the transcript below. There is so much in what she says — take the time to watch/read it. It’s well worth your time.
The National Fragile X Foundation is pleased to announce that the state of Nebraska has now launched its version of an Achieving A Better Life Experience (ABLE) account. Known as the “ENABLE” national program, it offers enrollment to qualified individuals with disabilities both in Nebraska and throughout the country.
Dr. Marcia Braden on the difficulties associated with patients with Fragile X syndrome transitioning from a pediatric to an adult care provider.
Author note: This guideline was authored by Liane Abrams, MS, CGC, Sharyn Lincoln, MS, CGC, Brenda Finucane, MS, CGC, and Susan Howell, MS. CGC and reviewed and edited by consortium members both within and external to »