2023 Advocacy Day Asks
NFXF Advocates head to Capitol Hill to ask for ongoing federal funding for Fragile X research and legislation to support telemedicine
Research Funding Opportunity from CDMRP/PRMRP for Fiscal Year 23
Announcing FY 2023 federal research funding opportunities across six award categories available for all Fragile X- associated conditions and disorders.
Welcome Class of 2023 Board Members
Executive Director Hilary Rosselot welcomes the incoming class of 2023 Board Members. We look forward to working together to serve the entire Fragile X community.
New Fragile X Clinic in Philadelphia
Announcing a new Fragile X clinic located at Children's Hospital Philadelphia
NFXF and FXAA Fragile X Premutation Terminology Survey
Help the NFXF and FXAA- share your opinion of common Fragile X premutation terminology by completing this quick survey.
Premutation Concerns — Presentation
Dr. Randi Hagerman discusses all of the Fragile X-associated conditions and disorders and provides strategies for some of their characteristics.
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
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.
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.
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.
Healx Shares an update on their IMPACT-FXS trial
Healx updates the Fragile X Community About their Fragile X Program and the IMPACT-FXS trial. The IMPACT-FXS trial is closed and Healx plans to open a new FXS trial in 2023.
The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X Syndrome
The pandemic caused by the spread of the coronavirus disease (COVID-19), beginning in early 2020, had an impact beyond anything experienced in recent history. It is important to understand how this pandemic era has impacted school-aged children with FXS so that we may continue to successfully navigate the changes that come with living through a pandemic and to understand what we can improve in the case of a future pandemic.
Exploring Parents’ Concerns Regarding Long-Term Support and Living Arrangements for Their Children with Fragile X Syndrome
Given the limited data regarding future planning specific to individuals with Fragile X Syndrome (FXS) and the growing population of this community, this study sought to explore the concerns and challenges caregivers of individuals affected by FXS encounter when considering long-term support plans.
Long-Term Follow-Up of Telehealth-Enabled Behavioral Treatment for Challenging Behaviors in Boys with Fragile X Syndrome
This study showed the significant impact that behavioral treatments can have on rates of challenging behaviors commonly exhibited by boys with FXS, particularly when parents are coached to implement the intervention with their child via telehealth.