The NFXF Blog
“X Strides With Greater Chicago” 2024 a Huge Success!
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.
Congratulations to Our 2024 Jr. Investigators Awardees!
Congratulations to our 2024 Junior Investigators! We are SO excited to have such brilliant minds in the Fragile X field. The NFXF is proud to support these Junior Investigators and build the next generation of Fragile X experts.
Lunch & Learn Series: FMR1 Carriers Report Executive Function Changes Prior to FXTAS: A Longitudinal Study
David Hessl, PhD, joined us for a 45-minute webinar where he presented the results of a longitudinal study focusing on executive function changes in people with the FMR1 premutation. The presentation was followed by a moderated Q&A.
A 40 Year History of Supporting Research
The NFXF has worked hard over the past 40 years to increase our understanding of Fragile X-associated conditions and we will continue to do so in the years to come!
A Message from Harmony Biosciences Before the 19th NFXF International Fragile X Conference
Here's a message from our friends at Harmony Biosciences in advance of the 19th NFXF International Fragile X Conference.
Research Funding Opportunity: RFA-HD-25-002: Centers for Collaborative Research in Fragile X and FMR1-Associated Conditions
In June 2024, NIH published RFA-HD-25-002: Centers for Collaborative Research in Fragile X and FMR1-Associated Conditions. If you or someone you know are researching FXS and/or FMR1-associated conditions, this could be a great funding opportunity for you!
Fragile X Advocacy Newsletter – June 2024
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
The NFXF Heartland Chapter Hosts 9th Annual “Bike To X Out Fragile X”
Nancy Carlson and the NFXF Heartland Chapter — Iowa and South Dakota hosted their 9th Annual Bike To X Out Fragile X on Saturday, June 1, 2024, in Des Moines, Iowa.
2024 Advocacy Day Experience – Dillon Kelley
Dillon Kelley, Advocacy Ambassador to the NFXF Board of Directors shares his experience at the 2024 NFXF Advocacy Day.
Addressing Aggressive Behavior in Adolescents and Adults with Fragile X Syndrome
New family-friendly content is available that will provide families and other caregivers with a better understanding of the possible causes of aggressive behavior along with recommendations for how to respond during and following an aggressive incident.
Improving Treatment Through Leadership of the FXCRC
Established in 2006, the NFXF Fragile X Clinical and Research Consortium is a network of over 30 clinics that specialize in Fragile X care.
Financially Empowering the Fragile X Community Through ABLE Accounts — Webinar
Join us for the Financially Empowering the Fragile X Community Through ABLE Accounts webinar with Mark Raymond Jr. & John Finch.