OHSU scientists, at leading edge of rare disease research, host Feb. 29 conference

Oregonian David Frohnmayer, who’s lost two daughters to a rare disease, will speak about importance of continued research

The family of former University of Oregon President David Frohnmayer knows the tragedy of a “rare disease.”

The Frohnmayer family has lost two daughters to complications from Fanconi anemia, a genetic disorder that occurs in 1 out of 135,000 births and leads to bone marrow failure and often to leukemia and other cancers. The Frohnmayers have another daughter, 25-year-old Amy, who has the disease. The average life span for people born with Fanconi anemia is 20 to 30 years.

But the Frohnmayer family, which founded the Fanconi Anemia Research Fund 23 years ago, sees hope in advances medical researchers are making in tackling Fanconi anemia and hundreds of other rare diseases. “The important research being done on Fanconi anemia is vital not only because it can help people like Amy, and thousands of others who have this disease,” Frohnmayer said. “It is also important because what scientists learn about FA gives them new insights into tackling other diseases, especially cancer and leukemia.”