The NFXF Blog
CDC Awards $4 Million Cooperative Agreement to Build on the Work of the FORWARD FXS Natural History Study!
A $4 million cooperative agreement to “Characterize the Natural History of Fragile X Syndrome to Inform the Development of Intervention and Outcome Measures” was awarded to Dr. Elizabeth Berry-Kravis of Rush University Medical Center by the Centers for Disease Control and Prevention (CDC).
POcKIT Study: At-Home Study for Young Children with FXS
Purdue University is conducting a research study to learn about how genetic, biological, nutritional, and environmental information relates to health and development in Fragile X syndrome.
South Carolina and Wisconsin Proclaim Fragile X Awareness Day
The governors of Wisconsin and South Carolina proclaim July 22, 2021 as Fragile X Awareness Day in South Carolina. Read their proclamations.
NFXF Webinar Series: NIH Fragile X Centers of Excellence
Learn about the Centers for Collaborative Research in Fragile X and FMR1-Related Conditions Program, which supports research to improve the diagnosis and treatment of Fragile X syndrome and its related conditions.
NFXF Webinar Series: How FORWARD is Advancing Our Understanding of Fragile X Syndrome
Representatives from the CDC join Dr. Elizabeth Berry Kravis discusses the advances made in understanding Fragile X Syndrome through FORWARD.
How is Fragile X syndrome inherited?
This infographic and two-minute tip video answer the question, How is Fragile X syndrome inherited. It is one of the most common questions about Fragile X.
Study: Adolescents and Adults with IDD Needed for a Spatial Abilities Study
The Spatial Development Lab at Montclair State University is conducting a research study to learn about spatial abilities, such as why we sometimes get lost in the environment.
Tips for Flying on an Airplane
Traveling with your young or adult child with Fragile X syndrome on an airplane can be very stressful for both of you. These tips are provided by parents based on their experiences with their own children. Find what works for you, your child, and your family.
Using Mindfulness and Acceptance Techniques to Reduce Stress — Webinar
Dr. Anne Wheeler provides an overview of stress vulnerability in women with (and without) a premutation, and how mindfulness-based techniques can be helpful for increasing mindfulness, reducing stress, and improving overall well-being.
In Memory of Steve Warren
As a geneticist and academic, Warren’s contributions to the understanding of Fragile X and to the broader Fragile X community are immense. In addition to being a gifted scientist, he was an outstanding leader, mentor, and friend who will be greatly missed.
Females and Fragile X Syndrome — Webinar
Dr. Braden helps us understand the difference between males and females with Fragile X syndrome as well as strategies for common challenges for females that include executive functioning and relationships.
Welcome to Our Newest 2021 Board Members
On behalf of the NFXF Board of Directors, I am excited to welcome our newest class of directors for 2021. This group of individuals have all been active members of our Fragile X community for many years and contribute in all areas of outreach.