Joyce Owen

Director Emeritus | PhD

Joyce was a dear friend and neighbor of co-founders Lynn and David Frohnmayer; their daughters were playmates. When Kirsten Frohnmayer was diagnosed with FA, they were all devastated. Joyce, a molecular biologist, was able to help interpret information. When the Frohnmayers founded FARF, Joyce was one of the earliest board members. She did the page layout and editing of the FA Family Newsletter for a number of years, and several editions of the Handbook for Families and Guidelines for Clinical Care. She also designed the first FARF website.

The Latest

News & Events

Introducing the Fanconi Cancer Foundation: A New Era in FA Research & Impact

In 1989, Lynn and David Frohnmayer founded the Fanconi Anemia Research Fund (FARF), determined and desperate to find a cure for their three daughters diagnosed with Fanconi anemia (FA). Since then, their vision has grown into a vibrant community of FA families, researchers, clinicians, donors, fundraisers, staff, and volunteers, all dedicated to improving outcomes for people with FA.

Read More >

The Genetic Revolution for Fanconi Anemia Begins Now 

World-Renown Experts Take On the Root of the Problem The long-awaited genetic revolution for rare genetic diseases has arrived and with it, the potential to cure diseases like FA within our lifetimes using state-of-the-art gene therapy (gene replacement) and gene...

Read More >

From Diagnosis to Advocacy: My Story with Fanconi Anemia

My name is Blue Mohr and I’m a 27-year-old living with Fanconi anemia (FA). I’m from Austin, Texas, though I am currently living in Washington, D.C. where I’m pursuing a Master of Public Health degree from the George Washington University with concentrations in epidemiology, cancer, and public health communication and marketing. 

Read More >