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
Daniel Kold
Member
Daniel lives with his wife and son in a small town close to Copenhagen, Denmark. He is 45-years-old and works as a pedagogical assistant at a nursery. Daniel received a bone marrow transplant in 1985 and had one oral cancer in 2014, the same year he first attended his first FA Adult Meeting. Daniel strives to be a positive role model and to show younger people with FA and their parents that there are plenty of reasons to plan for a better future for yourself or your child. FA is serious, but Daniel sees the power of using humor to make life a little bit easier. A self-proclaimed “big child”, gaming is a big passion of his. He worked in the gaming industry for years and also used it raise funds though livestreaming online games. He launched a podcast called “Life, Death, and Happiness” that featured the stories of those living with rare diseases (many guests have FA). Next on his creative endeavors is releasing a Danish rap album in May 2021. Daniel is committed to living life to the fullest and serving as an inspiration on how to live with FA in a positive way.
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.