The NFXF Blog
Faces of Fragile X: Avery
Avery is beautiful. She has the best curly hair around. She loves animals, routines, her neighbor friends, her cousins, and putting on makeup with her auntie. She is so smiley and always excited to see her cousin Elliott.
Faces of Fragile X: Nicholas
What would you like others to know about him? He is helpful and very patient when we drag him all over the place. What is your favorite thing about him? His smile is amazing and he is so fun to hang out with. If you could tell someone who doesn’t know anything about Fragile X one thing, what would it be? People with Fragile X have a very genuine heart. School can be a challenge but if you stay involved you can make it through. Once you get through the school years it is easier for them to be themselves.
Visual Perception Study
Our research is looking at how you see and remember the visual world, and how attention changes what we see. We hope our findings will provide a better understanding of the differences in vision and attention occurring in autism.
Purdue University: Brain and Behavior Study
Our goal is to better understand the different mechanisms within the brain that contribute to the development of psychiatric conditions, including depression, so we can establish better prevention and intervention efforts within this population.
Male Self-Advocates’ Panel at the NFXF International Fragile X Conference
Watch the session with the male self-advocates at the 16th NFXF International Fragile X Conference.
Provide Comments on the NIH Strategic Plan
Please provide your comments on the draft NIH Strategic Plan for Fragile X.
NFXF Testimony to House Appropriations Committee
On April 9, 2019, the National Fragile X Foundation provided testimony to support Fragile X research funding at the Centers for Disease Control and the National Institutes of Health. Below is Linda Sorensen's written testimony.
‘Fishing for a Cure’ and Inspiration for Other Unique Fundraisers
The annual Fishing for a Cure fundraiser, hosted by Joey Christoff in honor of his son Mitch, is an example of inspiring and creative ways to raise money for Fragile X. Thank you Joey and Mitch!
Clinical Trial in Canada: Metformin
Researchers are testing the effectiveness of Metformin to help improve daily living for individuals with Fragile X syndrome. Individuals aged 6–25 who have been diagnosed with FXS may be eligible.
After the Autism Diagnosis: What You Need to Know About Genetic Testing
We found two issues potentially hindering the convergence of an autism diagnosis with a known genetic cause. One is lack solidarity on whether or not to recommend genetic testing, and the second is whether or not the test will include the FMR1 gene (or any specific gene for that matter).
Should I Use Cogmed Intervention for Memory and Attention in Fragile X Syndrome?
The NFXF's Clinical Trials Committee provides family-friendly recommendations on the use of Cogmed intervention for memory and attention in Fragile X syndrome.
A Computer-based Intervention for Memory and Attention in Fragile X Syndrome
A research team from the UC Davis MIND Institute recently published findings from a study using a computer program called Cogmed to train memory, flexible thinking, and attention in children and adolescents with Fragile X Syndrome. Referred to as ‘executive function’ - memory, flexible thinking, controlling impulses, and attention are problems characteristic of individuals with Fragile X Syndrome. The computer program was employed with 100 children and adolescents with Fragile X Syndrome – presenting them with challenging visual and auditory tasks involving memory and attention and challenging them to think flexibly in order to complete those tasks.