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So far NFXF has created 489 blog entries.

Critical Incident Management for Mothers of Children with Fragile X Syndrome

By |2017-02-09T16:47:06-05:00Feb 9, 2017|Carriers|

Dealing with critical incidents is very important for caregivers of individuals with Fragile X syndrome (FXS), particularly biological mothers. Unfortunately, critical incidents occur frequently for many caregivers of children with FXS. Behavioral outbursts and aggression are critical incidents that take place in the home or in the community. For biological mothers of children with FXS who carry the premutation gene, there is the added predisposition to anxiety, as well as other emotional concerns (Coleman & Riley, 2014), which can amplify their response to these critical incidents.

Moms' Night Out with Southeastern Pennsylvania

By |2017-02-09T11:31:55-05:00Feb 9, 2017|Events, Southeast Pennsylvania|

[mpc_image preset="preset_2" image="26932" margin_divider="true" margin_css="margin-bottom:15px;" image_size="700_thumb" image_opacity="100" image_inner_border_gap="0" effect="none" image_hover_opacity="100" mpc_ribbon__disable="true" animation_in_type="transition.expandIn" animation_in_offset="100" animation_in_duration="1200" animation_in_delay="600"]In mid-January, our Southeastern Pennsylvania group hosted a moms' night out, and it was a tremendous success! They enjoyed good food [...]

The 'Asks' for NFXFAD2017

By |2017-02-09T10:24:47-05:00Feb 9, 2017|Advocacy Day|

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.

IA: Bike for Fragile X

By |2017-02-07T09:54:46-05:00Feb 7, 2017|Events, Heartland Events|

Get ready for the 2nd annual Bike to X Out Fragile X event! Voted our most innovative event of 2016, this 56 mile ride includes food, fun, beer and raffle items!

Fragile X Family Ties Run Deeper Than Party Lines

By |2017-02-02T15:58:22-05:00Feb 2, 2017|Advocacy|

The 115th Congress is just getting underway and there is no better time to start making new friends. One of the best ways to do that is by attending the 14th annual NFXF Advocacy Day coming up on February 28 and March 1st. We need both seasoned advocates and first timers to share the load. NFXF advocates have consistently proven that participating in the process, telling your stories and making your voices heard makes all the difference in the world.

Fragile X Premutation With Dr. Randi Hagerman — Webinar

By |2023-12-21T00:44:51-05:00Feb 1, 2017|Webinar|

Our very own founder, Dr. Randi Hagerman of the UC Davis MIND Institute, joins us to discuss issues in Fragile X premutation carriers. Needless to say, she is a major force in research for Fragile X and one of the biggest names in our field! Join us for a presentation and some time for Q&A!

The Smiling Faces of Our Advocates are Worth More Than Millions

By |2017-01-23T13:47:34-05:00Jan 23, 2017|Advocacy Day|

NFXF advocates have been to Washington every year since 2004, and we’ll be there on March 1, 2017, on our 14th consecutive year. Some years, our high hopes were realized and new programs were created because of our hard work. Other years, turmoil in all quarters put us at-risk for cuts, or elimination, but we were thrilled to maintain the status quo. Last year, we stayed in the game and made new, or nurtured, old relationships to make sure we’d be there when the budget reigns loosened. This year our budget balancing act continues, and new friendships with eager learners await our advocates smiling faces. Join us and help us fight the good fight.

I Have FXTAS: Now What?

By |2024-01-21T18:04:11-05:00Jan 18, 2017|FXTAS|

FXTAS is a chronic disease. If FXTAS patients maintain good general health and do not have other medical problems, many can have fulfilling lives for years after diagnosis. Regular visits to a neurologist, high levels of physical activity, and the use of other therapies and resources are key to sustaining a good quality of life.

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