The NFXF Blog
5th Annual FORE! Fragile X Golf Event
The annual FORE! Fragile X golf event fundraiser, hosted by the Souder family, has been an incredibly inspiring demonstration of support. Thank you Jay, Anne and Alec - and your many supporters over the years!
Home for the Holidays: Making the Visit Comfortable
A reader asks (and we answer): I heard it can be challenging for individuals with Fragile X to meet new people and be in new situations. Do you have any tips on making the children feel comfortable?
New Fragile X Clinic in New Orleans
Announcing a new Fragile X clinic located at Children's Hospital New Orleans which will serve the Greater Gulf South region
6th Annual Fishing for a Cure Fundraiser
The annual Fishing for a Cure fundraiser, hosted by Joey Christoff in honor of his son Mitchell, is an example of inspiring and creative ways to raise money for Fragile X. Thank you Joey and Mitch!
Giving Tuesday – Our Gift to You
On this Giving Tuesday, we want to give you a gift of thanks - and one we believe will help you on your own Fragile X journey.
Latent Class Analysis Identifies Distinctive Behavioral Subtypes in Children with Fragile X Syndrome
FORWARD // Among the different models resulting from the latent class analysis, a 5-class solution yielded the most clinically meaningful pharmacotherapy-independent behavioral subtypes.
All Love Threads — Clothing Designed to Benefit the Special Needs Community
Since the birth of his brother Filippo, Guido Raponi has constantly looked for ways to help support the Fragile X and special needs communities. The idea for All Love Threads was born when he looked into his closet and saw a number of unworn, fundraising t-shirts and sweatshirts and saw an opportunity to create fashionable awareness clothing.
One Fragile X Experience: Carrier & Mom Answers FAQs — Video
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.
Study: Transitioning to Adulthood with Fragile X syndrome
University of Kansas’ LifeSpan Institute is conducting research to learn about the transition to adulthood for individuals with Fragile X syndrome, as well as the experiences of parents of these young adults.
Carolyn and John Tomberlin Provide Matching Gift at International FX Conference Live Appeal
Carolyn and her husband John kicked off the Live Appeal at the NFXF International Fragile X Conference in July with a one-to-one matching challenge of up to $30,000.
Housing Options for Adults With Fragile X Syndrome — Webinar
Adult services may be limited and difficult to access, so how does a parent deal with that nagging question that keeps them up at night: What will happen when I’m gone?
Gregg Harper Reminds Us of the Importance of Year-Round Advocacy
Former Congressman and Fragile X Dad, Gregg Harper Reminds Us of the Importance of Year-Round Advocacy.