Emily Mack remembers her first time at an NFXF Int'l Fragile X Conference. “The best part was that it was the first time where I truly felt like everyone around me just understood, without explanation of who we were, what Fragile X was, and the highs and lows that it can bring to everyday.” Read her story.
Help raise Fragile X awareness on Halloween by carving your pumpkin in a Fragile X theme. Download stencils and posters for free.
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.
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 »
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 »
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 »
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 »
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 »
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 »
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, »
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 »
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 »
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 »
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, »
EveryLife Foundation is holding the Rare Artist Art Contest and we encourage you to enter! All members of the rare disease community throughout the world – including patients, caregivers, family, researchers and medical professionals – are »
