Category: Community

2018 CSN Awards

Posted on July 12, 2018
Community / CSN Leaders News / Heartland / New York City / Tri-State

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 leaders who serve the Fragile X community so well. Leader of the Year Joe Garera, NFXF Tri-State Chapter Leader, has

The Family Reunion You Want to Go To

Posted on May 9, 2018
2018 NFXF International Conference
Community / International Fragile X Conference

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, but in this digital age couldn’t I get the same type of content online? The registration fees, travel expenses, and

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

Posted on April 3, 2018
Brewfest, community, Fundraiser, fundraising
Community / Fundraiser

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 good friends. What a great night! We could not have succeeded without the generous support of donations, auction contributors, and

Volunteer Highlight: Rachel DeLine

Posted on March 30, 2018
Community Support Network, Volunteer, Volunteer Highlight
Community / Fundraising

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 each year. Rachel seeing this trend seized the opportunity for the NFXF Greater Atlanta Chapter to hop along with it.

10 Pins Down! The Bowling Fundraiser Was A Success!

by David Salomon

Posted on March 22, 2018
family event, Fundraiser
Community / Fundraiser

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 her younger brother, Darsh, who has Fragile X syndrome. An estimated 80 people attended. We thank Vanshi for organizing and the attendees

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, can reach beyond those challenges and find love. This love creates a story which needs to be told. Here is what I love

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

Posted on January 12, 2018
2018 NFXF International Conference, Education
Community / 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 Pacific Time. All presentations will be reviewed by at least three people. The Conference Committee will choose whether a presentation

Thanks Margaret and Marty! The 2017 NFXF Lifetime Achievement Award

Posted on November 10, 2017
NFXF Awards, NFXF Lifetime Achievement Award
Community

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 4th, they received the NFXF Lifetime Achievement Award at a reception in their hometown of St. Louis. Their son, Sam,

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

Posted on November 9, 2017
Awareness, Northern Arizona, Phoenix
Community / Community Support Network / Northern Arizona / Phoenix

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 friends in our community. Check out the photos below.

Fragile X Pumpkin Carving Contest

Posted on October 26, 2017
Community

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 with the NFXF X or a Fragile X image of your choosing. You can download stencils of varying sizes (PDF), make

Where is the Hope?

by Jayne Dixon Weber

Posted on October 24, 2017
Daily Living Strategies
Community / Education / Hope & Inspiration

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, I read ‘mental retardation’, low IQ, special education, behavior problems, delayed speech, and on and on. So, where’s the hope?”

Enter the 2017 Rare Artist Contest by EveryLife Foundation

Posted on October 23, 2017
Community

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 welcome to participate. The contest will accept entries through December 7th, and visitors to the Facebook gallery can vote for their favorites once

Honoring Margaret and Martin Israel with the NFXF Lifetime Achievement Award

Posted on October 2, 2017
Community

The National Fragile X Foundation is pleased to announce that we will be honoring Margaret and Martin Israel as the recipients of the 2017 Lifetime Achievement Award. An award presentation and celebration will be held in their hometown of St. Louis, Missouri on November 4th. For over 37 years, Margaret and Martin Israel have been an

Coaching Colburn – Finding Love & Laughter in the Face of Autism & Fragile X

James Colburn was born with Fragile X syndrome. At 26, he is a child at heart who finds joy in the smallest things and uses his gift of comedic timing to inspire those around him. James is living proof there is love and laughter in the face of autism and Fragile X.

Fragile X Mentioned on General Hospital

Fragile X got some mainstream exposure on Friday’s episode of General Hospital. One of the main characters, Samantha McCall, talks with her estranged adoptive dad. Trying to reconnect with his daughter, Samantha’s Dad mentions that he’s been, “doing some research on the genetic disorder that her brother Danny was born with, Fragile X syndrome.” He goes