Momma Cherri heard about Jordan’s bell ringing and Fragile X Awareness Month, so she created a Fragile X burger and filmed an episode to educate her viewers about Fragile X syndrome and teach them how to make a Fragile X burger.
What would you like others to know about him? Logan is 10 years old and was diagnosed at 15 months old. It hasn’t been an easy road but with help from family, friends, and his teachers he has progressed and learned so much.
Meet our friend David. David likes the show Law and Order because they fight the bad guys. He had a lot of fun at last year’s Conference.
What would you like others to know about him? Pat is funny and likes to laugh. He does not speak but is funny in his own way. As an example, if you ask, "How [...]
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.
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.
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.
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.
Watch the session with the male self-advocates at the 16th NFXF International Fragile X Conference.
Please provide your comments on the draft NIH Strategic Plan for Fragile X.
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.
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!
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.
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).
The NFXF's Clinical Trials Committee provides family-friendly recommendations on the use of Cogmed intervention for memory and attention in Fragile X syndrome.
