Passion for Community and Support Key to Success for Annual Conference

By |2017-02-22T09:00:20-05:00Feb 22, 2017|Central Connecticut, Community Support Network|

When Tammy and Andy Selinger received their daughter’s diagnosis in 1994, even their doctor was unsure what it meant. He just told them the test was positive for Fragile X. One of their first calls was to the National Fragile X Foundation, where they were connected to a long-time volunteer, Margaret Israel, who spent more than an hour and half on the phone with them. The support they found during such a critical time motivated them to get involved because as Andy says, “Nobody should get diagnosed without someone to talk to.”

CT: 10th Annual Conference

By |2017-08-02T13:11:24-04:00Feb 12, 2017|Central Connecticut Events, Events|

Fragile X Society of Connecticut 10th Annual Conference Date: October 21, 2017 Time: Location: University of Connecticut Health Center 263 Farmington Avenue Farmington, CT 06030 Hosts: Fragile X Society of Connecticut Details Save [...]

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.

Load More Posts