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
[mpc_image preset="preset_2" image="26932" margin_divider="true" margin_css="margin-bottom:15px;" image_size="700_thumb" image_opacity="100" image_inner_border_gap="0" effect="none" image_hover_opacity="100" mpc_ribbon__disable="true" animation_in_type="transition.expandIn" animation_in_offset="100" animation_in_duration="1200" animation_in_delay="600"]In mid-January, our Southeastern Pennsylvania group hosted a moms' night out, and it was a tremendous success! They enjoyed good food [...]
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!
Fragile X Premutation With Dr. Randi Hagerman — Webinar
Our very own founder, Dr. Randi Hagerman of the UC Davis MIND Institute, joins us to discuss issues in Fragile X premutation carriers. Needless to say, she is a major force in research for Fragile X and one of the biggest names in our field! Join us for a presentation and some time for Q&A!
The Smiling Faces of Our Advocates are Worth More Than Millions
NFXF advocates have been to Washington every year since 2004, and we’ll be there on March 1, 2017, on our 14th consecutive year. Some years, our high hopes were realized and new programs were created because of our hard work. Other years, turmoil in all quarters put us at-risk for cuts, or elimination, but we were thrilled to maintain the status quo. Last year, we stayed in the game and made new, or nurtured, old relationships to make sure we’d be there when the budget reigns loosened. This year our budget balancing act continues, and new friendships with eager learners await our advocates smiling faces. Join us and help us fight the good fight.
I Have FXTAS: Now What?
FXTAS is a chronic disease. If FXTAS patients maintain good general health and do not have other medical problems, many can have fulfilling lives for years after diagnosis. Regular visits to a neurologist, high levels of physical activity, and the use of other therapies and resources are key to sustaining a good quality of life.
Journey of Fathers Following their Child’s Fragile X Diagnosis
You are invited to participate in an online research survey to investigate the journey of fathers, following their child’s Fragile X diagnosis and focusing on their support-seeking behaviors.
NYC Fragile X Chapter’s Dance Party Recap
The Fragile X Resource Group of Greater New York City gathered on a cold January day to dance their cares away and enjoy time with their Fragile X family.
Research: Non-Targeted Fragile-X Carrier Testing: Implications for Reproductive Decisions
This study examines women’s experiences with Fragile X carrier screening in the United States. The purpose of our research is to determine how women are being offered carrier screening for Fragile X, when they are offered screening and which healthcare professionals are responsible for returning their results. The study entails interviews with women who have undergone Fragile X carrier screening in the last six months.