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.
Directory
Amy Vangel
Member
Amy is 30 years old and lives with her fiancé, Matt in Weymouth, Mass., where she currently works as a nanny for two young boys. She was diagnosed with FA in 1995 and underwent an unrelated stem cell transplant in 2002. Recently, she was diagnosed with squamous cell carcinoma and was successfully treated. Amy has been a guest speaker at Dr. Alan D’Andrea’s class at Harvard Medical School, where she shared her experiences and perspective as an FA patient with early-stage researchers. Amy is open about sharing her story, her knowledge about growing up with FA and how it impacts everyday life. Described as positive and spunky, Amy is looking forward to bringing her perspective of living with FA to help bridge connections between patients and scientists. Amy hopes to provide her personal insight for those who are dealing with FA to know that they and their families are not alone and can live happy lives with this diagnosis.
The Latest
News & Events
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...
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.