The NFXF Blog
Local Tournament Raises over $1,100 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 $1,100 for NFXF!
CT: 10th Annual Conference
Fragile X Society of Connecticut 10th Annual Conference Date: October 21, 2017 Time: Location: University of Connecticut Health Center 263 Farmington Avenue Farmington, CT 06030 Hosts: Fragile X Society of Connecticut Details Save [...]
Critical Incident Management for Mothers of Children with Fragile X Syndrome
Dealing with critical incidents is very important for caregivers of individuals with Fragile X syndrome (FXS), particularly biological mothers. Unfortunately, critical incidents occur frequently for many caregivers of children with FXS. Behavioral outbursts and aggression are critical incidents that take place in the home or in the community. For biological mothers of children with FXS who carry the premutation gene, there is the added predisposition to anxiety, as well as other emotional concerns (Coleman & Riley, 2014), which can amplify their response to these critical incidents.
Moms' Night out with Connecticut and Western MA
It's always fun with moms get together and share stories and good times!
Change of Command Celebration for Missouri
After eight years of dedicated service, Diane Southard stepped down at president. We gathered as a group to celebrate her accomplishments and formally welcome Sara Hamilton into the role!
Moms' Night Out with Southeastern Pennsylvania
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The 'Asks' for NFXFAD2017
In preparation for the National Fragile X Foundation's Advocacy Day 2017, we are publishing initial details on our "asks" for this year's meetings. It is our goal to provide each advocate ample time to prepare, in an effort to ease anxiety related to the day. Our asks, as always, are bipartisan and reflect the best interests of our community. Personal politics have no place in Advocacy Day so we hope each of you will come to Washington, DC prepared to share your story and fight for the needs of all those living with Fragile X.
IA: Bike for Fragile X
Get ready for the 2nd annual Bike to X Out Fragile X event! Voted our most innovative event of 2016, this 56 mile ride includes food, fun, beer and raffle items!
National Fragile X Foundation Launches NFXF Biobank™
FOR IMMEDIATE RELEASE contact@fragilex.org Accelerating Research into Treatments and Cures of Leading Inherited Cause of Intellectual Disability Washington, DC (February 6, 2017) – The National Fragile X Foundation (NFXF) announces the launch of the NFXF [...]
Fragile X Family Ties Run Deeper Than Party Lines
The 115th Congress is just getting underway and there is no better time to start making new friends. One of the best ways to do that is by attending the 14th annual NFXF Advocacy Day coming up on February 28 and March 1st. We need both seasoned advocates and first timers to share the load. NFXF advocates have consistently proven that participating in the process, telling your stories and making your voices heard makes all the difference in the world.
PA/NJ/DE/NY: Baseball Game
Save the date! We're heading to the ballpark!
CA: Fragile X Walk
Join us at Bonelli Park in San Dimas for a second year!! We will also have a Family Fun Day following the race with food and fun so plan on making a day of it!