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9 02, 2017

The 'Asks' for NFXFAD2017

By |2017-02-09T10:24:47-05:00Feb 9, 2017|Advocacy Day|Comments Off on The 'Asks' for NFXFAD2017

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.

12 04, 2017

NFXF Advocacy Update: The ABLE Act and More

By |2017-04-12T17:11:53-04:00Apr 12, 2017|Advocacy|Comments Off on NFXF Advocacy Update: The ABLE Act and More

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 »

25 04, 2012

National Call-In Day in Support of the ABLE Act , Wednesday April 25, 2012

By |2012-04-25T10:26:13-04:00Apr 25, 2012|Action Alert, Advocacy|Comments Off on National Call-In Day in Support of the ABLE Act , Wednesday April 25, 2012

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 »

24 01, 2020

International Fragile X Conference

By |2020-08-05T19:01:17-04:00Jan 24, 2020|Comments Off on International Fragile X Conference

NFXF International Fragile X Conference The NFXF International Fragile X Conference is the largest of its kind in the world. This biennial event brings professionals, caregivers, self-advocates, and family members together—a truly unique »

30 07, 2020

Sophia James: Life as a Sibling of Someone with Fragile X Syndrome

By |2020-08-03T00:00:08-04:00Jul 30, 2020|International Fragile X Conference|Comments Off on Sophia James: Life as a Sibling of Someone with Fragile X Syndrome

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.

8 07, 2016

Nebraska Launches the ENABLE National Program

By |2016-07-08T08:21:20-04:00Jul 8, 2016|Keeping You Informed|Comments Off on Nebraska Launches the ENABLE National Program

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.

4 06, 2018

Genetic Counseling and Family Support Consensus Document

By |2018-06-05T09:28:03-04:00Jun 4, 2018|Comments Off on Genetic Counseling and Family Support Consensus Document

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 »

1 06, 2017

Newly Diagnosed

By |2019-07-22T20:20:21-04:00Jun 1, 2017|Comments Off on Newly Diagnosed

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 »

23 05, 2017

Webinars

By |2020-09-18T09:53:32-04:00May 23, 2017|Comments Off on Webinars

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 »

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