Fragile X Syndrome Self-Advocates Share Their Challenges and Triumphs

Each panelist prepares a presentation and talks the viewers through their life experiences so far. As needed, Dr. Braden gently guides them and asks questions like they’re old friends — which, of course, they are — as they share their emotional, social, and cognitive challenges and triumphs. They each have their unique story.

A quick note about the wide range of signs and symptoms in Fragile X syndrome: The amount of help an individual with FXS may need in their daily life varies, though males are affected more frequently and generally with greater severity. In fact, significant intellectual disabilities are found in the majority of males vs. about one-third of females with FXS.

A small percentage of females will have no apparent signs of the condition — intellectual, behavioral, or physical — and often are identified only after another family member has been diagnosed.

Now it’s time to meet Allison Cohen, Michael Cohen, Doug Cooper, Aaron Heisel, Samantha Rhodes, Joshua Rocker, Jodi Selinger, Spencer Shelton, and Cassie Stringer.