Empowering Families, Changing Lives

Kara always thought she would return to work after having children. Two sons with FXS meant taking a different path. She chose instead to focus on advocating for her sons to get the medical services and educational support they need. Hear about Kara’s family’s experiences and how National Fragile X Foundation has helped them make their way. Part of our series alongside Shionogi spotlighting caregivers and their unique experiences for Fragile X Awareness Month.

Rene shares his story about his son’s diagnosis of Fragile X syndrome and about his hope for the future. Part of our series alongside Shionogi spotlighting caregivers and their unique experiences for Fragile X Awareness Month.

Jessie, mother of 5 with Fragile X syndrome, shares her story and what she hopes the future of care looks like. Part of our series alongside Shionogi spotlighting caregivers and their unique experiences for Fragile X Awareness Month.

Ilana and Adam are dedicated to advocacy as they champion for their teenage son living with Fragile X syndrome. Part of our series alongside Shionogi spotlighting caregivers and their unique experiences for Fragile X Awareness Month.

For Diane, a busy mom of eight children, four with FXS, life can be unpredictable and beautiful. From cognition to language, FXS affects each of Diane’s children differently. Part of our series alongside Shionogi spotlighting caregivers and their unique experiences for Fragile X Awareness Month.

Denise’s son Patrick was diagnosed with Fragile X syndrome 30 years ago. Hear about her hope for greater awareness and acceptance of FXS.

In this 90-second video, we answer the frequently asked question, “What is Fragile X?” by explaining Fragile X Syndrome, the premutation, and its associated conditions, as well as how Fragile X is inherited.