Category: Community Support Network

Western Massachusetts Hosts Rollerskating Event

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 to free skate rentals and soft drinks. They had a great time skating, with many kids trying it for the first time.

Passion for Community and Support Key to Success for Annual Conference

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.”



Local Tournament Raises over $1100 for NFXF

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!



We Rock The Spectrum Family Day

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 family party at We Rock the Spectrum. Kids were able to choose their own superhero logo, designed by our Sibs Group

2015 Community Support Network Summit Recap

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 NFXF, comprised of groups typically organized and run by parent volunteers. The CSN provides emotional and educational support to families and individuals living with



2015 Community Support Network Awards

2015 CSN Award Winners

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 Year Trailblazers of the Year CSN Leader of the Year The group awards are nominated by their regional leaders. The winners are



“Mission to Lars” Comes to the US on September 25

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 screened at our very own 13th International Fragile X Conference in Miami, Florida. Audiences were delighted to follow Tom’s journey, along with



You Help Build Relationships

The world can look like a lonely place when 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 “You are not alone.” Your donations help us to foster real relationships that help our families cope with the daily struggles



Introducing the Sibling and Self-Advocate Community Support Group!

The National Fragile X Foundation’s  (CSN) is proud to welcome its newest and most unique group: the Sibling and Self-Advocate Community Support Group! What makes this group so unique is that – unlike all the other groups within the CSN that consist of families centered in one location – the Sibling and Self-Advocate CSN group



Introducing… The Community Support Network

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.



Fragile X Walks Across Texas!

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!



LINKS Leaders Gather in St. Louis

by NFXF

The backs of sixty-three T-shirts bore this quote at the NFXF LINKS Leadership Summit in St. Louis on October 25 and 26 and it is that individual commitment to the foundation’s mission that makes our LINKS{{1}} Support Network stand out from other volunteer groups. Our  leaders are all volunteers with one common bond: Fragile X.