On Tuesday, July 22, the Rhode Island State House held a special lighting called Lighting the Way for Fragile X in honor of National Fragile X Awareness Day. And, of course, all of the Little Rhody Warriors were there!
The NFXF is excited to share the second video in our animated series designed to raise awareness and educate about Fragile X!
Hear about Denise’s hope for greater awareness and acceptance of Fragile X syndrome in our video series, created with Shionogi.
Moshi Moshi is hosting their 6th annual fundraiser to support the NFXF during Fragile X Awareness Month in July.
Hear about what Diane calls her “beautiful chaos” in our video series with the National Fragile X Foundation
Hear about Kara’s family’s experiences and how National Fragile X Foundation has helped them make their way.
Rene shares his story about his son’s diagnosis of Fragile X syndrome and about his hope for the future.
Ilana and Adam are dedicated to advocacy as they champion for their teenage son living with #FragileXSyndrome.
Jessie, mother of 5 with #FragileXSyndrome, shares her experience and what she hopes the future of care looks like.
We estimate that we only know about half of those with Fragile X. We’re on a mission to find and support every family living with Fragile X.
Nancy Carlson and the NFXF Heartland Chapter — Iowa and South Dakota hosted their 10th Annual Bike To X Out Fragile X on Saturday, June 7, 2025, in Des Moines, Iowa.
Yet again, this year’s fundraiser was the most successful yet, with a record 35 teams — making it the first time they filled all available holes with teams!
Little Rhody Warriors families held their second annual “Fragile X Awareness Walk” on May 18 in Warwick, Rhode Island. More than 50 family members, caregivers, and friends participated in this X Strides event.
Rhode Island families gathered for a night out at a local restaurant on April 12th to share experiences and stories.
So many people — volunteers, team members, donors, advocates, self-advocates, clinicians and clinic teams, researchers, therapists, educators, counselors, advisors, and others — over the past 40 years have helped make the National Fragile X Foundation what it is today!
The Greater Chicago Fragile X chapter held their “X Strides with Greater Chicago” event on July 13 in Glenview, Illinois. More than 50 families and caregivers participated including heading to the park splash pad to cool off afterward.
Families for Fragile X held their first “Fragile X Walk” event on July 20 in Warwick, Rhode Island. More than 50 family members, caregivers, and the general public participated their first X Strides event.
We are excited to share that three fantastic new board members are joining the National Fragile X Foundation this year. Join us in welcoming Jill Dolan, Michele Kaplan, and Kerry Stedke to the NFXF Board of Directors.
The NFXF is excited to share a new 90-second animated video designed to raise awareness and educate about Fragile X!
This video is a tribute to the resilience, warmth, and unwavering spirit of the Fragile X community. While the journey is not always easy, it is one rich with hope and strength in togetherness.
Many in the community already know or know of our founder, Dr. Randi Hagerman. Dr. Hagerman told a short story about how the National Fragile X Foundation came to be at this year’s NFXF International Fragile X Conference, and we want to share her story with you.
We kicked off the 19th NFXF International Fragile X Conference with an incredible keynote address from Carly Dolan, Jill Dolan, David Tillman, and Tamaro Hudson, sharing their Xtraordinary stories.
The Haugen’s third Fragile X Christmas Party was another smashing success. Their fundraising goal was $25,000, and they raised a whopping $36,420.
To help spread awareness of Fragile X syndrome and life as a sibling of someone living with Fragile X, Sophia James, a top-10 finalist in the 2020 season of American Idol, delivered the keynote address on the opening day of the 17th NFXF International Fragile X Conference Virtual Series.
The annual Fishing for a Cure fundraiser, hosted by Joey Christoff in honor of his son Mitchell, was another great success in 2024! Check out the big fish and the big smiles.
More than 50 friends and supporters gathered on September 29 to eat great food, taste various wines, bid for prizes, and raise awareness and funds to support the Fragile X community.
Nancy Carlson and the NFXF Heartland Chapter — Iowa and South Dakota hosted their ninth annual Bike To X Out Fragile X on Saturday, June 1, 2024, in Des Moines, Iowa.
Organized by the Western Massachusetts Fragile X chapter this event brought together 26 competitive teams and 150 attendees and raised $4,000.
The NFXF launched a website in the mid-90s. Since many people had little to no online access, we would send them the entire website, which had been downloaded to a CD!
The Haugen’s second annual Fragile X Christmas party gathered nearly 100 guests for music, food, and drinks while learning more about Fragile X.
The most effective way to support someone living with FXS in any setting is to maximize their focus, cooperation, and enjoyment.
NFXF Greater Chicago Chapter hosted and organized two local events to bring together families living with Fragile X syndrome.
NFXF Western Massachusetts Chapter hosted and organized local events to unite the Fragile X community.
Fragile X conditions can be complicated to explain. Here we provide seven basic facts about the biology and genetics of Fragile X to help with understanding.
NFXF team member Missy Zolecki shares her recent experience as a consumer reviewer for congressionally directed federal funding for Fragile X research.
All Love Threads is a fashion brand that channels the love, care, and enthusiasm of the special needs community into modern clothing designs.
Ilana Garber, a Fragile X carrier and mother of a child with Fragile X syndrome, shares her experience with Fragile X and offers her perspective to people interested in testing for themselves or their child.
The American Academy of Pediatrics (AAP), with support from the CDC, hosted “Identification, Management, Caring for Children with Fragile X Syndrome Virtual Course” on June 22, 2022. The course will be available as a free AAP course through August 1, 2025.
Organized and hosted by Andrea and Kevin Marner, the 3rd Annual Quad Cities Fragile X Golf Outing on June 25, 2022, at the Byron Hills Golf Course in Byron Hills, Illinois, was a huge success
This is Aaron Haugenʼs story as told by his mother and other family and friends. It starts with their quest for a diagnosis when he was a young child and goes on to showcase what’s possible.
This story about Ian Weberʼs relationship with the freshman football coach at Fairview High School in Boulder aired as part of the Denver 9NEWS franchise “Storytellers” and won the Colorado Broadcasters Award for best news feature.
American Idol featured Sophia’s relationship with her brother James, who has Fragile X syndrome. The show reached 8.05 million viewers.
Diane and her son Joshua volunteered for a clinical trial a little over a year ago. In this heartwarming video, his mom shares how their family made the decision to participate, and what the experience has been like so far.
If you’re looking for fundraising ideas, consider these suggestions from Joey Christoff, who recently hosted his fourth “Fishing for a Cure” fundraiser.
The Western Massachusetts chapter hosted an evening of wine tasting, appetizers, a silent auction, and hand-roasted coffees for non-wine drinkers.
Dillon worked on Capitol Hill as an intern for the Committee on House Administration, chaired by Rep. Gregg Harper, whose son also has Fragile X syndrome.
Nine friends chipped in to enjoy six days of fishing, golf, tennis, swimming, zip-lining, biking, the beach, and anything else on the island. Everyone was able to enjoy time away and donate to support community, awareness, and research for Fragile X families.
