Community

Kara and Steve Frech are Standing Up to Fragile X

Kara and Steve Frech received the diagnosis that both of their sons inherited Fragile X Syndrome in 2006. Kara and her mother attended their first NFXF International Fragile X Conference in St. Louis, MO. Filled with information, Kara integrated and applied that knowledge into successful strategies for each of her sons. The National Fragile X Foundation has continued to provide the most up to date information and education to help with daily living.

By Dan Whiting| 2018-12-27T09:53:24+00:00 Dec 27, 2018|Community|Comments Off

How to Honor the Two Victims with Fragile X Syndrome of the Pittsburgh Shooting

From Jay Souder, NFXF Board President, on behalf of the National Fragile X Foundation: As a parent of an adult son with Fragile X syndrome, the news coming out of Pittsburgh that two of the [...]

By Dan Whiting| 2018-10-31T08:29:24+00:00 Oct 28, 2018|Community|Comments Off

FX-O-Lantern 2018

The Second Annual Fragile X Pumpkin Carving Contest is here! The mission is to raise awareness of Fragile X by carving the NFXF X into a pumpkin and displaying it, along with an awareness [...]

By Dan Whiting| 2018-10-23T15:20:28+00:00 Oct 23, 2018|Awareness Day, Community|Comments Off

Minnesota’s Inaugural X Strides

The weather was beautiful for our first X Strides walk, and we had an encouraging turnout! We had 50 people register online and 20 people register on Saturday. It was the best turn out that [...]

By Dan Whiting| 2018-08-07T20:15:15+00:00 Aug 6, 2018|Community, Minnesota, X Strides|Comments Off

2018 CSN Awards

At the 16th NFXF International Fragile X Conference, three awards for outstanding leadership and work serving Fragile X families in the NFXF Community Support Network were presented. Please congratulate and, more importantly, thank the following [...]

By Dan Whiting| 2018-07-12T09:07:08+00:00 Jul 12, 2018|Community, CSN Leaders News, Heartland, New York City, Tri-State|Comments Off

The Family Reunion You Want to Go To

I remember registering for the NFXF International Fragile X Conference in 2014 and thinking, is it really worth it? I had heard some anecdotal stories from friends and knew that I would get a lot of information, [...]

By NFXF| 2018-05-09T14:29:33+00:00 May 9, 2018|Community, International Fragile X Conference|Comments Off

Cheers to raising $6,000! Read about the annual Brewfest!

We are very excited to announce that we raised nearly $6,000 this year at the annual Greater Atlanta BrewFest! We gathered on March 24th in Kennesaw, GA, with great beer, amazing BBQ, live music, and [...]

By David Salomon| 2018-04-03T12:01:44+00:00 Apr 3, 2018|Community, Fundraiser|Comments Off

Volunteer Highlight: Rachel DeLine

Written by Kimberly Powell Beer is hard work! Just ask Rachel DeLine, Greater Atlanta Chapter Leader. The Greater Atlanta area has been steadily growing in the craft beer industry with more and more breweries opening [...]

By David Salomon| 2018-03-31T13:11:50+00:00 Mar 30, 2018|Community, Fundraising|Comments Off

10 Pins Down! The Bowling Fundraiser Was A Success!

In February, the friends in Woodbridge, NJ raised over $300 for Fragile X at a bowling fundraiser and family event. It was organized by a high school sophomore, Vanshi Shah, in honor of [...]

By David Salomon| 2018-03-22T12:32:05+00:00 Mar 22, 2018|Community, Fundraiser|Comments Off

What do you love about Fragile X?

At first, that might sound like a strange question. But, love is someone or something that touches you in your deepest place and warms your heart. Fragile X, along with its many challenges, [...]

By Dan Whiting| 2018-02-07T13:23:49+00:00 Feb 7, 2018|Community, Donate, Fundraiser, Fundraising, Uncategorized|Comments Off

Call for Presentations now open for the 16th International Fragile X Conference

We are now accepting submissions for presentations at the 16th International Fragile X Conference to be held July 11-15, 2018 in Cincinnati, Ohio. Please be sure to submit by Tuesday, February 20, 2018 at Midnight [...]

By NFXF| 2018-01-22T19:59:45+00:00 Jan 12, 2018|Community, International Fragile X Conference|Comments Off

Thanks Margaret and Marty! The 2017 NFXF Lifetime Achievement Award

We started November giving thanks for a couple who have spent a lifetime helping the Fragile X community. Margaret and Marty Israel have been volunteering for the Fragile X community for 37 years. On November [...]

By NFXF| 2017-11-15T16:11:10+00:00 Nov 10, 2017|Community|Comments Off

Awareness in the Valley! Phoenix holds a Fragile X Walk.

We had a wonderful walk with about 70 people in attendance. The course was beautiful as was the weather. Attendees enjoyed a catered lunch on the patio. It was fun to connect with families and [...]

By NFXF| 2017-11-15T16:10:34+00:00 Nov 9, 2017|Community, Community Support Network, Northern Arizona, Phoenix|Comments Off

Fragile X Pumpkin Carving Contest

The First Annual Fragile X Pumpkin Carving Contest is here! The mission is to raise awareness of Fragile X by carving the NFXF X into a pumpkin and displaying it. The details: Carve a pumpkin [...]

By Dan Whiting| 2017-10-26T20:39:07+00:00 Oct 26, 2017|Community|Comments Off

Where is the Hope?

A grandmother of a newly diagnosed grandson once called me to talk about the diagnosis. “Where is the hope?” she asked. I did not say anything to see if she would go on. “I mean, [...]

By Jayne Dixon Weber| 2017-10-24T10:53:32+00:00 Oct 24, 2017|Community, Education, Hope & Inspiration|Comments Off

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