An (Oral) Story of the National Fragile X Foundation

In Her Own Words

Dr. Hagerman founded the NFXF in 1984. This year is notable because it signals 2024 as our 40th anniversary. In celebration, Robby Miller, NFXF director of clinic and international relations, has been writing about the foundation’s history in a series of blog posts throughout the year. He lovingly documented our origin story in the first in the series. Still, we also wanted to share the story as told by Dr. Hagerman at this year’s NFXF International Fragile X Conference.

For those not familiar with Dr. Hagerman, she is an internationally recognized researcher in the field of genetics of autism spectrum disorder with a special focus on genomic instability. She specializes in pediatric child development and behavior and is the medical director of the UC Davis MIND Institute. Her impressive titles include distinguished professor in the Department of Pediatrics and endowed chair in Fragile X research.

Dr. Hagerman has also authored or co-authored nearly 1,000 articles (1,004, according to ResearchGate) and has been recognized as a top female scientist according to Research.com’s Top 1000 Female Scientists in the World for the last three years. Even more remarkably, she and her husband, Paul, discovered Fragile X-associated tremor/ataxia syndrome (FXTAS). The awards and accolades go on and on.

We encourage you to read NFXF’s history, learn about our impact over the years, and discover where we are going from here.

1. The National Fragile X Foundation — 1984: The Beginning
2. The National Fragile X Foundation — The Early Years: 1984–1990s
3. The 1990s and the NFXF Becoming a True National Organization
4. How the NFXF has Informed the Community Through the Years
5. NFXF International Fragile X Conferences
6. Improving Treatment Through Leadership of the FXCRC
7. A 40-Year History of Supporting Research
8. Legislative Advocacy
9. A Global Fragile X Community
10. The People Who Are the NFXF

Thank you, Dr. Hagerman, for founding the NFXF and continuing alongside us in support of the Fragile X community throughout the past 40 years!