Not everyone knows about Fragile X…yet
Meet Denny and Marcia. Their son Aaron was diagnosed with FXS because of a recommendation from a savvy teacher. Fragile X DNA testing confirmed Aaron had Fragile X. When Denny and Marcia were told about Aaron’s diagnosis, the medial team said, “Aaron has FXS. Aaron has not changed; your information about his has. Aaron is still Aaron.” Denny and Marcia have endeavored to go through life that way—celebrating Aaron’s wins and finding the supports he needs along the way.
Did you know Fragile X is a fairly “new” condition? Fragile X was first termed Martin-Bell syndrome in 1943. In the 1990s, genetic testing technologies improved, and the specific gene associated with Fragile X syndrome — FMR1 — was discovered.
Not everyone knows about Fragile X… yet. But we’re on a mission to make Fragile X a household name. Stories like Aaron’s underline why it’s important to raise awareness about Fragile X. So more teachers, clinicians, and researchers know what it is and what to look for and families can obtain accurate diagnoses quickly to help their loved ones succeed. Stories like these also emphasize why it’s important to provide support to families in their day-to-day lives. That’s why we’re hosting a pilot series of caregiver support groups in 2026, matched to where you are in your caregiving journey. We’re also releasing new resources and tools to support you in every stage.
Help us ensure no one feels alone. Donate today to make these supports a reality for families who know their Fragile X status, and for the many families who will uncover their Fragile X status in the future.
Families like the Haugen’s and the NFXF will always be here for you!
