What does a Fragile X diagnosis mean for an individual – and for the family members who support them?

In the latest video from USC’s Fragile X Center of Excellence, Dr. Jane Roberts, Principal Investigator, and Robin Blackwood – a parent of a person with Fragile X, advocate, and longtime friend of the SC Family Experiences Lab – share their perspectives on Fragile X research and the importance of including family voices.

Robin and Dr. Roberts discuss how Fragile X can affect families across the lifespan, from the diagnostic journey and family planning to health considerations and questions that may arise for parents, siblings, and extended family members. The video highlights both the personal impact of Fragile X and the value of research that reflects families’ needs and priorities.

As Dr. Roberts explains, advancing our understanding of Fragile X has implications beyond the Fragile X community. It can also inform research on autism, ADHD, intellectual disability, and family interaction.

We are proud that our lab is part of this work. Dr. Jessica Klusek, Co-Principal Investigator of the Fragile X Center of Excellence, leads research focused on women with the FMR1 premutation. Supporting mothers and better understanding their health and experiences are essential to understanding how Fragile X affects the entire family system.

Together, this work helps ensure that Fragile X research remains grounded in the experiences, needs, and priorities of the families at its center.

Watch “Fragile X at USC” on YouTube

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