Never Accepting Defeat

Florida State coach and family raise awareness and funds for Fanconi anemia research at the U

December 5, 2011

By Nicole Endres

Jimbo Fisher has a microphone and he’s not afraid to use it.

When the Florida State University football coach and his wife, Candi, learned earlier this year that their youngest son, 6-year-old Ethan, has a rare blood disease called Fanconi anemia, they dealt with the devastating news in private.

Then they decided to use their visibility in the media to raise awareness of the disease, an inherited blood disorder that can affect all systems in the body and leads to bone marrow failure.

The Fishers also established the Kidz1stFund™ to raise money through online donations and T-shirt and hat sales for Fanconi anemia research at the University of Minnesota, a national leader in blood and marrow transplantation, and they are promoting the fund through a campaign called OnaKwest for a Cure. Jimbo Fisher is donating all fees from his public speaking engagements to the Kidz1stFund™ as well.

They’ve already raised more than $400,000 for this work.

“One thing I’ve learned as a football coach is to never accept defeat,” Jimbo Fisher says. “We are in this to win the fight against Fanconi anemia on behalf of all the children who share this struggle with Ethan.”

For decades, Fanconi anemia was thought to be untreatable, but promising advances in medical research have improved the prognosis.

Many of those advances have happened at the University of Minnesota. That’s why the Fisher family’s search for the country’s foremost Fanconi anemia team led them to University of Minnesota Amplatz Children’s Hospital.

Today most children who have Fanconi anemia will need a transplant of stem cells, derived either from bone marrow or umbilical cord blood, to extend their lives. University of Minnesota physician-scientists performed the world’s first successful bone marrow transplant in 1968 and have been blazing new trails in the field since.

“Through research, improvements are made each year in treating patients with Fanconi anemia — improvements that have changed the survival rate after unrelated donor bone marrow transplant for this disease from less than 30 percent to greater than 80 percent in the last 15 years,” says Margaret MacMillan, M.D., Ethan’s doctor and a leading Fanconi anemia researcher. “But there is much more to do. We will not stop until we have 100 percent survival.”

Determination is just one of the qualities the Fishers liked about MacMillan when they met her. Candi Fisher says MacMillan spent time generously with the family to help them understand what they were facing and what treatment options they had for Ethan.

“One thing that she gave us was hope, and that was something at that moment that we were desperately striving for,” adds Candi Fisher. “It made us feel like this was something we could beat, with her help and with the University of Minnesota. … They have invested so much of themselves in this research, and that made us feel like we weren’t alone.”

The Fishers’ goal for the fundraising and awareness campaign is not a dollar figure. It’s a cure, so that Ethan and other kids with Fanconi anemia may lead full lives.

“We’re just hoping that we could make a difference in some way,” says Candi Fisher.

Source: Giving Matters