Frohnmayers'

Health Advocacy Acknowledged

Research!America honors the couple who founded the Fanconi Anemia Research Fund Inc. for their extensive volunteer work

The award, presented at a banquet in Washington, D.C., is given annually for "exceptional contributions as volunteer advocates for medical research."

In 1989, the Fronhmayers founded the Fanconi Anemia Research Fund Inc., an international organization that funds path-breaking scientific research.

In a short speech, President Frohnmayer dedicated the award to his two deceased daughters who were born with Fanconi Anemia, a rare genetic disorder that leads to bone marrow failure and often leukemia. According to the Research Fund, the disease is caused by a recessive gene that can remain dormant for generations. The president also thanked scientists who selflessly enhance the research of health-related diseases.

The Eugene-based group has collected more than $7 million, said Leslie Roy, family support coordinator for the Research Fund. Most of the money has been granted to science labs that search for a cure for the disease. "What (the Frohnmayers) have been able to do in such a short time is nothing short of remarkable," University spokeswoman Maureen Shine said. "This award speaks for their commitment to finding a cure not only for themselves but for many other families.

The Frohnmayers created a Fanconi Anemia family support group in 1985 for similarly afflicted families. Today, it supports more than 460 families. Additionally, the couple co-wrote the book "Fanconi Anemia: A Handbook for Families and Their Physicians." "Without them, families around the world wouldn't have someone to turn to," Roy said.

President Frohnmayer is a founding director of the National Marrow Donor Program and serves on the board for the Fred Hutchinson Cancer Research Center.

Lynn Frohnmayer is the former coordinator of the family support group for Fanconi Anemia. She also served as a national consultant and trainer for foster care replacement programs and co-founded the Lane County Relief Nursery, a nationally recognized center for treatment of families and children at risk of child abuse and neglect.

"It's advocates like Dave and Lynn that make medical research as beneficial as it is," Research!American spokesman Matthew Bowdy said.