While Preparing to Battle at Rose Bowl, Ducks and Seminoles Team Up to Fight Rare Disease
by Rob Moseley
Editor, GoDucks.com
The Rose Bowl on New Year's Day will bring together, for the first time, the Oregon Ducks and Florida State Seminoles to do battle on the football field.
The College Football Playoff semifinal also happens to match up two programs touched directly by a rare blood disease. Less than 1,000 people in the United States are afflicted by Fanconi anemia, yet among them are the daughters of former UO president Dave Frohnmayer, and one of Florida State coach Jimbo Fisher's sons.
The two families are responsible for creating the only two research organizations in the country to battle Fanconi anemia. They've coordinated to use the Rose Bowl as a fundraising opportunity, with fans able to pledge money for touchdowns scored by their favorite team, to be donated to the respective research fund.
"In football, one team wins and one teams loses; in this case everybody's a winner, because if anybody pledges anything, research will benefit," said Frohnmayer's wife, Lynn. "We'd love to see the Ducks prevail in our contest, as well as on the football field."
Pledges can be made via pldgit.com/rosebowl2015. Pledges to Oregon will go to the Frohnmayers' Fanconi Anemia Research Fund (FARF), and pledges to FSU will support the Fishers' Kidz1stFund.
The Frohnmayers' daughter Amy, 27, is battling Fanconi anemia, and the family lost two other daughters — Katie, 12, in 1991, and Kirsten, 24, in 1997 — to the disease. Fisher's son Ethan, 9, received his diagnosis about four years ago, at which point the coach's wife, Candi, consulted with the Frohnmayers.
"They were among the first ones we leaned on to gather information when we got the devastating news about our son," Jimbo Fisher said on Dec. 11 in Orlando, Fla., at the Home Depot College Football Awards show. "Their family has been through a lot of tragedy, but what they've done for the kids out there, for my son Ethan, we have tremendous respect."
The Frohnmayers founded FARF in 1989 after their family was touched by Fanconi anemia, which typically requires a high-risk bone marrow transplant that, even if successful, provides a media life span of 33 years due to the specter of various potential cancers. Initially their fundraising — now up to $29 million over 25 years — focused in part on transplant research being done at the University of Minnesota; the transplant success rate for Fanconi patients shot up from around 20 percent to over 90 percent.
The Masonic Children's Hospital at Minnesota has been the direct recipient of the $2.8 million raised by the Kidz1stFund created by the Fishers. That has allowed the Frohnmayers to shift their fundraising to other efforts, such as identifying and fighting causes of the disease at the genetic level.
"We need to work very hard to diagnose these cancers very early and find clever ways of treating them," Lynn Frohnmayer said. "That's a huge part of what we now support."
The Frohnmayers' research fund, a Charity Navigator four star charity, is now headed by Laura Hays, an expert in Fanconi science who was hired from Oregon Health & Science University. With help from fans of the two Rose Bowl participants, the Frohnmayer and Fisher families will be able to amass even more expertise to fight Fanconi anemia.
"Our money doesn't come from federal grants, it doesn't come from foundations," Dave Frohnmayer said. "It comes from bake sales, from 10k runs, from family picnics. You put 100 families to work, you can raise some money."
Rallying the support of Oregonians was one reason the Frohnmayers went public with the way Fanconi anemia has touched their family so tragically. That decision came up when Candi Fisher consulted with Lynn Frohnmayer after Ethan Fisher's diagnosis.
"Her main concern was, what were they going to do — were they going to go public with this diagnosis, or did they want to remain in a more private mode?" Lynn Frohnmayer recalled. "A lot of families don't want this to be in the newspaper, don't want to have people pity them. That was the focus of our discussion.
"My only advice to her was, every family needs to do what that family's comfortable with. There's no wrong way. But I told her what we had done, that we didn't want to just be victimized by this disorder. We wanted to take a more active stance, and try to push the science ahead for the sake of our kids."
Donations to the Rose Bowl Touchdown Fan Challenge can be made via pldgit.com/rosebowl2015.
