Ducks, Seminoles united in the fight against Fanconi anemia

Dave and Lynn Frohnmayer
Dave and Lynn Frohnmayer

As football fans across the nation turn their eyes to the inaugural college football playoffs on New Year’s Day, two research funds are hoping a unique connection between two competing universities will bring attention to a rare genetic disorder.

The UO Ducks will meet the Florida State University Seminoles on the field in the Rose Bowl in the first semifinal game of the playoffs. But the two universities also have personal connections to Fanconi anemia, an inherited disease that causes bone marrow failure, leukemia and cancer.

The connection is so strong that interim UO President Scott Coltrane and FSU President John Thrasher decided to support the cause as part of the traditional wager between universities before a big bowl game. Rather than the usual bet involving goodies intrinsic to each school’s state, like an Oregon salmon or Florida oranges, the two presidents will each make a donation the the Fanconi anemia fund in the other’s state.

Dave and Lynn Frohnmayer and their family first learned of Fanconi anemia more than 40 years ago. When their daughter Kirstin was diagnosed in 1973, little was known about the disease.

Children diagnosed with the disorder rarely lived to adulthood. Support groups and bone marrow registries were nonexistent. So the couple picked up the phone and started calling — doctors with knowledge of the disease, families fighting it. Soon researchers were asking them to help raise money for studies, and in 1989 they started the Fanconi Anemia Research Fund.

A little over 20 years later, Jimbo and Candi Fisher learned their young son Ethan had Fanconi anemia. While the success rate for bone marrow transplants had improved significantly and Fanconi patients now lived into their 30s and 40s, the Fishers knew more needed to be done and founded Kidz1stFund in 2011.

From Oregon to Florida, these two funds are the only ones in the country devoted to fighting Fanconi anemia and providing support and resources to the fewer than 1,000 U.S. patients now living with the disease.

“It is impressive how both President Emeritus Frohnmayer and Coach Fisher have turned their families’ personal challenges with Fanconi anemia into opportunities to raise money to fight the disease,” Coltrane said. “The UO and FSU may be rivals on the field, but we are united by our desire to support research and end Fanconi anemia.”

The Frohnmayers are a prominent Oregon family, with Dave having served as UO president from 1994 to 2009 and before that as dean of the law school and Oregon attorney general. Jimbo Fisher is in his fifth year as head football coach for the FSU Seminoles.

For those close to Fanconi anemia, there is hope that a powerhouse football game will bring renewed awareness to the disease.

“Scientific progress in FA has implications for millions worldwide,” Dave Frohnmayer said. “This bicoastal link raises the profile of the research. This is a really stellar moment to bring attention of its importance to everyone.”

Laura Hays, executive director of the Fanconia Anemia Research Fund, noted that much has been discovered about the disease and its treatment since the Frohnmayers started the fund.

“When the fund was started, we had no idea what caused FA. Now we know that 18 genes can be affected, including the two prominent breast cancer genes, BRCA1 and BRCA2,” said Hays, who has a doctorate in oncology science and previously researched Fanconi anemia at Oregon Health & Science University. “This disease is rare and affects so few people, but what we found from working on it is that the research has implications for so many others, specifically regarding diagnosing and treating cancer.”

When Kirsten was diagnosed, bone marrow transplants were limited to a perfectly matched sibling donor. When her sister Katie was diagnosed in 1986, no center was willing to do a transplant. Eventually, the creation of a bone marrow donor registry combined with the use of a specific drug raised the transplant success rate to more than 80 percent.

“The bone marrow transplant success has come a long way,” Hays said. “But it only fixes the blood part of the disease and not the cancer. A high proportion of FA patients get cancer. Continuing awareness and research is so important.”

The research fund has raised more than $29 million during the last 25 years to support families and fund over 100 doctors and researchers worldwide. During the last three years, Kidz1stFund has donated $2.8 million to the University of Minnesota Masonic Children’s Hospital, the largest treatment center for Fanconi anemia patients in the country.

The Frohnmayers are especially grateful to the many donors from Oregon. Many have followed the journey of the family, including the death of Katie in 1991 and Kirsten in 1997. Another daughter  with Fanconi anemia, Amy, is 27.

“People need to know that most of the funds raised have come from the state of Oregon. Without that support, this effort would have gone nowhere,” Frohnmayer said. “We have a really special feeling of gratitude for the people who have stepped forward. It’s been a very open and transparent sharing of concern for our family, and one for which we are very grateful.”

Fans of Oregon and Florida State can join the leaders of each university in the fight against Fanconi anemia by making a donation in the name of the Ducks or Seminoles.

—By Heidi Hiaasen, Public Affairs Communications