PASADENA, Calif. – Reigning national college football champions, Florida State University (FSU) Seminoles will take on No. 2 Oregon (UO) Ducks in the Rose Bowl, Jan. 1, but the teams have a shared goal that trumps their quest for the 2015 College Football National Title – a cure against Fanconi anemia (FA), a rare and incurable blood disorder plaguing two high-profile families within these major college programs.
FSU Head Football Coach, Jimbo Fisher and wife, Candi, have a 9-year-old son, Ethan, who was diagnosed with FA less than four years ago. Former UO President Dave Frohnmayer and wife, Lynn, have a 27-year-old daughter, Amy, with FA and have lost two other children to this deadly disease.
This high-stakes football play-off game has brought these families of opposing teams, and coasts, together for the first time to fight the battle off the field. The Frohnmayers founded The Fanconi Anemia Research Fund (FARF) in 1989 to fund grants for critical FA efforts and to support affected families, and the Fishers created Kidz1stFund immediately following their son’s diagnosis to fight this disease through research.
These are the only two FA research organizations in the country.
“It’s a terrible fate our families share, but one we use to fuel our fight against FA,” said Coach Fisher. “With the nation’s attention on the Rose Bowl, we have both an opportunity and responsibility to raise awareness for a much more critical victory in our sights.”
Over the past 25 years, FARF has raised more than $29 million to support families and fund over 100 doctors and researchers worldwide, all racing to find a cure. Since its inception, Kidz1stFund has donated $2.8 million directly to the University of Minnesota Masonic Children’s Hospital, the largest treatment center for FA patients in the country.
“Because of these aggressive efforts, we’re beginning to find ways to combat this disease that was once a total mystery and an immediate death sentence for children,” said Dave Frohnmayer.
Ethan and Amy are two of fewer than 1,000 people in the U.S. with FA. Nearly 100 percent of patients need high-risk bone marrow transplants before adulthood, and even then, survivors have an estimated median life span of only 33 years old.
FSU President John Thrasher and interim UO President Scott Coltrane have spoken directly about this significant connection between the schools. “The Fisher and Frohnmayer families have all our support for their dedicated research efforts,” said Thrasher.
Fanconi Anemia Research Fund, Inc. (FARF)
Lynn and Dave Frohnmayer started the Fanconi Anemia Research Fund, Inc. in 1989, to fund research into this disease and to provide support to affected families worldwide by medical referral, education, publications, and annual family meetings. To date, the Fund has raised more than $29 million. Fifty-six universities and institutions have received support from the Fund for almost 200 research projects to study FA. The Fund convenes an annual Fanconi Anemia Scientific Symposium at which researchers from around the world present the results of their research. To make a contribution or learn more, please visit www.fanconi.org or contact Laura Hays, PhD, at firstname.lastname@example.org or 541-687-4658. Media materials may be obtained at www.fanconi.org/press.
Laura Hays, PhD
Executive Director, Fanconi Anemia Research Fund
Kidz1stFund was established in 2011 by FSU head football coach Jimbo Fisher and his wife, Candi, to raise awareness and funds in support of research to fight Fanconi anemia, a rare but serious blood disease that affects thousands of children each year, including their younger son, Ethan. To date, Kidz1stFund has given over $2.8 million to fund groundbreaking research at the University of Minnesota Masonic Children’s Hospital. To make a contribution or learn more about the fight, visit www.Kidz1stFund.com. Additional media materials including fact sheets, interviews, b-roll and other visual assets may be obtained on www.Kidz1stFund.com/press.
The Zimmerman Agency