The ABLE Employment Flexibility Act

By |2022-06-30T16:28:24-04:00Jan 13, 2022|Advocacy|

The ABLE Employment Flexibility Act (H.R. 4672) permits employers to contribute to an employee’s ABLE account instead of a 401(k) – including an employer’s match. By saving it in the ABLE account it will not adversely affect most means-tested federal benefits.

Advocacy Day Social Story

By |2021-02-09T16:22:39-05:00Feb 9, 2021|Advocacy|

Our own Jayne Dixon Weber pulled together a social story to use to help you and your self-advocate prepare for the NFXF Advocacy Day on February 24, 2021.

Camping and Fragile X

By |2020-10-30T11:04:21-04:00Oct 30, 2020|Advocacy|

Because of the hard work of NFXF advocates over the past 20 years, decision-makers in Congress know what Fragile X is. Being present, persistent, and problem-solving is what gets things done in Congress.

Life with Fragile X: Who is Helping Who?

By |2020-10-07T11:14:06-04:00Oct 7, 2020|Advocacy|

We’re always looking for new ways to share and raise awareness about Fragile X, life with Fragile X, and the individuals and families it affects. Here we talk with Laura Dooling and her life with three cousins with Fragile X syndrome.

What a successful year for NFXF Advocates

By |2019-11-15T10:57:57-05:00Oct 11, 2019|Advocacy|

NFXF Advocates have had a very successful year! Our advocacy efforts focus on ensuring substantial federal investments in Fragile X research, policies that create opportunities for those living with Fragile X to have the best possible life, and an awareness in Congress of Fragile X. Here are some highlights of our efforts this year.

Fragile X Advocacy – August Recess Visits

By |2019-07-29T09:55:56-04:00Jul 29, 2019|Advocacy|

For the third year in a row, we are partnering with Rare Disease Legislative Advocates, a project of the EveryLife Foundation, to schedule Fragile X advocacy meetings with members of Congress and their staff during the August recess. Here is what you need to know.

Rep. Engel Raises Fragile X Awareness in Congress

By |2019-07-22T15:07:30-04:00Jul 22, 2019|Advocacy, Awareness Day|

Rep. Eliot Engel, D-NY-16, serves as the co-chair of the Fragile X Caucus in the U.S. House of Representatives. His co-chair is Rep. Chris Smith, R-NJ-4. To help raise awareness of Fragile X for National Fragile X Awareness Day, Rep. Engel had a statement. Read the full statement here.

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