An Xtraordinarily Successful Third – and Last – Fragile X Christmas Party!
The Haugen’s third Fragile X Christmas Party was another smashing success. Their fundraising goal was $25,000, and they raised a whopping $36,420.
Families for Fragile X Host Successful “Fragile X Walk”
Families for Fragile X held their first “Fragile X Walk” event on July 20 in Warwick, Rhode Island. More than 50 family members, caregivers, and the general public participated their first X Strides event.
“X Strides With Greater Chicago” 2024 a Huge Success!
The Greater Chicago Fragile X chapter held their “X Strides with Greater Chicago” event on July 13 in Glenview, Illinois. More than 50 families and caregivers participated including heading to the park splash pad to cool off afterward.
Enter the 2023 Rare Artist Contest by EveryLife Foundation
Rare Artist 2023 Contest is open for submissions until August 31. The Rare Artist Program was established in 2010 to exhibit the unique gifts of individuals impacted by rare disease to tell their story through art.
The Family Reunion You Want to Go To
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.
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 and soon after, Kara and her mother attended their first NFXF International Fragile X Conference in St. Louis.
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 [...]
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 [...]
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 [...]
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 [...]
What do you love about Fragile X?
[mpc_textblock content_width="100" font_size="16" font_line_height="1.7" margin_divider="true" mpc_tooltip__border_divider="true" mpc_tooltip__padding_divider="true"] 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 [...]
Thanks Margaret and Marty! The 2017 NFXF Lifetime Achievement Award
[mpc_textblock content_width="100"]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 [...]
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 [...]
Where is the Hope?
Getting a diagnosis is hard. It’s really hard. There has been nothing else like it in my life and I cannot imagine there ever will be. It made me sad … really sad.
Enter the 2017 Rare Artist Contest by EveryLife Foundation
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 [...]