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Expanding Employment Opportunities

By |2021-04-16T17:33:07-04:00Apr 16, 2021|Advocacy|

the National Fragile X Foundation joined forces with the new CEO Commission on Disability Employment so we can work together to eliminate barriers to employment for all individuals with a disability.

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.

Help Expand Telehealth Options

By |2020-12-07T14:35:54-05:00Nov 10, 2020|Advocacy|

The TREAT Act works to resolve this. The Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act was introduced in the Senate by Senators Roy Blunt (R-MO) and Chris Murphy (D-CT). The legislation provides temporary licensing reciprocity for health care professionals in good standing during COVID-19 and future national emergencies.

NFXF Advocacy in 2021

By |2020-11-05T17:07:56-05:00Nov 5, 2020|Advocacy|

Gregg Harper, Fragile X dad, former member of Congress for Mississippi's 3rd Congressional district, offers a message to all Fragile X families following the 2020 election, looking forward to NFXF advocacy in 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.

Sign-Up for In-District Congressional Meetings

By |2019-05-15T16:28:04-04:00May 15, 2019|Advocacy|

Advocating for Fragile X families when members of Congress and their staff are in their home districts is key for three reasons: 1) You don't have to travel; 2) You generally have more time with them; 3) You underscore this is important to their constituents

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