In the Fanconi anemia (FA) community, the name “Frohnmayer” carries a legacy like no other. Lynn and David Frohnmayer founded the Fanconi Anemia Research Fund (FARF) in 1989 as a means to legally support the work of a handful of researchers. This is how ‘the FA research fund’ was created.
Thirty-four years later, this living room operation has grown to a worldwide organization that has funded more than $32 million in research, supported thousands of people affected by FA, developed life-saving therapies, and uncovered major connections to a problem that affects us all: cancer.
“When our daughters were diagnosed with FA in the 1980s, we were told that patients with this illness would probably not live past the first decade of life, and certainly not past the second,” Lynn Frohnmayer recounts. “We were told the primary cause of death would be bone marrow failure because these patients simply couldn’t produce enough blood cells to sustain life. The only cure for that problem was a bone marrow transplant, but back then, the outcomes for transplant were terrible. So early on, we decided to focus a large part of our resources on improving protocols and outcomes for transplants. I’m happy to report that investment in research did in fact improve outcomes tremendously. Now, transplants are safer than they have ever been, with more than 90% success rates at FA centers.”
These incredible advances mean children with FA are becoming adults with FA. In fact, more than half of people with FA in FARF’s database are adults. Unfortunately, adulthood brings another major complication.
“We now have many individuals in their 20s, 30s, 40s and even older. Many have had a chance to go to college and pursue careers. Some have gotten married and even had children,” says Lynn. “But there is another shoe to drop. And that shoe is cancer. That has become our primary focus today.”
Lynn has now spent half of her life working to cure FA. She has lost all three daughters to this disease, and her husband David to cancer. At the end of August, she turns 80 years old, and we want to mark this occasion with you. We want to celebrate Lynn by ensuring that her family’s legacy of advancing life-saving research and finding a cure will continue. We invite you to celebrate all that the Frohnmayers have made possible, and join us is taking FA research and treatment to the next level.
Would you like to send a message only? Feel free to send via email and we will forward it to Lynn.