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 [...]
On May 5, the Greater Chicago Fragile X Group held a Research Update featuring Dr. Elizabeth Berry-Kravis. Participants in the meeting heard from Dr. Elizabeth Berry-Kravis as she shared information about current areas of research into [...]
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 [...]
12 Finger Outdoor Adventure brought their rock climbing gear and equipment along with several of their employees to take the time to get our Fragile X-ers exposed to rock climbing. Siblings of those affected by [...]
On April 2, Western Massachusetts Fragile X hosted a rollerskating event for local families. The event was private, and to ensure the comfort of all guests, the facility was made sensory-friendly. Guests were treated [...]
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.”
With the support of their community, NFXF board members and outstanding CSN leadership, Greater Atlanta Fragile X hosted an amazingly successful Brew Fest event for the second year in a row.
What happens when you combine friendly competition and a campaign to raise awareness of Fragile X? Tremendous success! Western Massachusetts participated in the 2nd annual Hadley Cornhole Championship, raising awareness and over $1100 for NFXF!
On Sunday, December 4 the Fragile X Resource Center of Missouri hosted an afternoon full of ziplining, bouncing, painting, swinging and dressing up like super heroes for the 30 friends who joined us for a [...]
On September 25 to 27, 58 leaders visited St. Louis, Missouri, for the National Fragile X Foundation’s second biennial CSN Leadership Summit. The CSN is the national volunteer program of the [...]
The Awards began in 2014 as a way to recognize the incredible work and dedication of our CSN groups and leaders. There are four categories: Most Innovative Event Up & Comers of the [...]
https://vimeo.com/42276975 We’re excited to know that Mission to Lars is finally coming to the United States on September 25, 2015! The documentary starring Tom Spicer, a young man living with Fragile X syndrome, was [...]
The world can look like a lonely place when you first learn that Fragile X runs in your family. That is why one of the first things we tell people who receive a diagnosis is [...]
One of the most meaningful experiences for a Fragile X family is to meet another family and know you are not alone in this journey. At the National Fragile X Foundation, our mission is to serve you by connecting and supporting individuals and families through our family support network.
Saturday, November 16 was all about raising awareness and funds across Texas! The Texas Fragile X Association (Dallas/FT Worth) the Fragile X Alliance of Texas – Houston, the Fragile X Alliance of Texas – San Antonio all hosted a walk!