Portland, Ore.
Uncommon genetic disorder has stricken Oregon's Frohnmayer family
Fanconi anemia is a fatal genetic disorder that affects more than 20,000 families worldwide. The disease is particularly well known in Oregon because of its diagnosis in the three daughters of Dave and Lynn Frohnmayer of Eugene. The Frohnmayers founded the FA Research Fund in 1989, before their daughters Kirsten and Katie died of the disease.
"Although we haven't found a cure, great strides have been made in research on Fanconi anemia largely because of the fund's existence," said Grover Bagby, M.D., director of the Oregon Health & Science University Cancer Institute and chairman of the Scientific Advisory Board for the fund. "It is no accident that 85 percent of the worldwide research supported by the Fund is thanks to the donations of Oregonians, given the awareness of the disease raised by the Frohnmayers."
The symposium, sponsored in part by a grant from the National Institutes of Health, convenes at 8 a.m. on Thursday, Nov. 15, with a welcome by Dave Frohnmayer and an overview of recent research by Bagby. Then, an international array of scientists will give individual talks on their research through Saturday afternoon. More than 150 researchers and physicians will be in attendance.
A Presenters Dinner will be held at 7 p.m. on Nov. 15th, in the Broadway Rooms at the Hilton. Frohnmayer will present the organization's first Distinguished Service Award to Bagby for his unparalleled scientific and organizational leadership on behalf of Fanconi anemia patients worldwide.
Since its inception, the fund has raised $10.9 million for research, symposia, physician recruitment, publications, family education and other services. The fund has awarded $5 million in research grant awards to 87 researchers in 27 laboratories around the world.
In 1989 the gene for Fanconi anemia had not yet been discovered. Eight genes have now been discovered and six cloned by researchers in Amsterdam, Toronto and Portland, who were funded by the FA Research Fund. Bone marrow transplant success rates for Fanconi anemia patients have increased from 50 percent with a matched sibling donor in 1989 to approximately 83 percent today. Similarly, the success rate for an alternate donor transplant has gone from zero percent in 1989 to approximately 60 percent today.
Because of the advances in medical science that have resulted from research sponsored by the fund, Fanconi anemia patients are living longer. As these patients have aged, researchers have found that they have an extremely high likelihood of getting leukemia, cervical cancer, and head and neck cancer, and at a much earlier age than the general population.
For more information about Fanconi anemia and the FA Research Fund, contact Mary Ellen Eiler, executive director, at 541-687-4658, or visit www.fanconi.org.
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