Congress is moving forward on our two key asks: Reps. Harper and Engel have sent their cosigned letter to the House Appropriations Committee asking for support for research at [...]
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[title title="The Fragile X Clinic: What Does It Mean For You?"] At our clinic in Boston we often hear families ask why they should go to a Fragile X clinic if they are happy with [...]
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.
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 [...]
We offer free webinars to address some of the most frequently asked questions about Fragile X. Experts offer tips and other information you need to know. Family members, caregivers, and professionals are [...]
For many families when getting a diagnosis of Fragile X syndrome (FXS), Fragile X associated primary ovarian insufficiency (FXPOI) or Fragile X associated tremor ataxia syndrome (FXTAS), this is the first time [...]
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 [...]
Despite the fact that we're now 7 weeks into fiscal year 2012 the budget for 2012 that impacts FX research and programming (CDC, NIH, DOD) remains unfinished. There was a slim chance that it would [...]
The Achieving a Better Life Experience Act (ABLE) of 2011 will be reintroduced in the U.S. Senate and House on November 15 by Represenatives Crenshaw and McMorris-Rogers and Senator Casey. The Act will give individuals [...]
Best Practices in Fragile X Syndrome Treatment Development By Craig A. Erickson, Walter E. Kaufmann, Dejan B. Budimirovic, Ave Lachiewicz, Barbara Haas-Givler, Robert M. Miller, Jayne Dixon Weber, Leonard Abbeduto, David Hessl, Randi J. [...]