Each of the five finalists for the Uplifting Athletes Rare Disease Champion Award will have their story featured here. In order to vote for the next Rare Disease Champion, please visit our voting page here. The winner will be announced on February 1st.
Vitals: Head football coach at Florida State since 2010, was offensive coordinator and quarterback coach at FSU for three years prior to replacing the legendary Bobby Bowden as head coach.
Quick Hits: The Florida State job is Fisher’s first as a head coach. In this his fourth season he’s guided the Seminoles to the BCS National Championship Game at the Rose Bowl. As the FSU head coach, Fisher is 44-10 overall. … Prior to become the head coach at FSU, Fisher spent three seasons as the Seminoles’ offensive coordinator and quarterback coach. … Before landing in Tallahassee, Fisher served as the offensive coordinator and/or quarterback coach at Auburn, Cincinnati and LSU from 1993-2006.
Jimbo’s Story: Jimbo Fisher is a head college football coach. Among the many common threads among big-time college coaches is a sheer detest for losing.
Whether or not Florida State wins or loses on each given Saturday during the fall is still very important to the Seminoles’ skipper.
But ever since finding out early in 2011 his youngest son Ethan was battling the rare disease Fanconi anemia, Fisher and his wife Candi have a new perspective on what winning would look like.
“One thing I’ve learned as a football coach is to never accept defeat,” Fisher said. “We are in this to win the fight against Fanconi anemia on behalf of all the children who share this struggle with Ethan.”
Fanconi anemia is inherited and affects about 1 in every 130,000 people. Patients with the rare disease can’t repair their DNA. When their bodies make new cells, they come with big mistakes that lead to complications.
In support of not only their youngest son, but all Fanconi anemia patients, the Fisher’s started a national foundation called Kidz1stFund in August of 2011.
When the Fisher’s launched the foundation, Candi said it was a “call to action for us, and we hope to use our situation to improve the chances of every child whose life may be extended and improved by advances against this illness.”
Since 2011, the Kidz1stFund has donated nearly $2 million to the University of Minnesota’s Amplatz Children’s Hospital, home to the Fanconi anemia Comprehensive Care Program.
“I love what I do,” Fisher said. “The more success I have, the more awareness I can bring to this disease.”
Fisher and his wife have become strong advocates for Fanconi anemia and the rare disease community. When opportunity knocks, the Fisher’s answer the door.
And earlier this year, Fisher’s players joined his team on a whole different level.
Injured tight end Kevin Haplea, a transfer from Penn State, started a chapter of Uplifting Athletes at Florida State. And the chapter chose Fanconi anemia as its rare disease to champion.
Fisher was genuinely touched when found out the FSU Chapter was holding a touchdown pledge for the Syracuse game in mid-November. And the more than $8,000 the chapter raised went to Fanconi anemia research.
“It’s really great. It kind of caught us off guard,” Fisher said. “Me and Candi are so appreciative. It’s a great organization and he brought it down here and did it for us. I really couldn’t believe it.
“It really is (touching). Hap is a neat guy. He really is.”
In addition to the Uplifting Athletes Touchdown Pledge Drive, Fisher joined forces with University of Pittsburgh head coach Paul Chryst to promote awareness.
Players from both teams wore “I fight Fanconi” decals on the back of their helmets for the game.
“We thought, we can go private with this and keep it within,” Fisher said. “Or we can out publicly and not only help Ethan, but help all those kids who don’t have a voice – whose dads aren’t the head football coach.”
Like most rare disease families, the Fisher’s don’t know what lies ahead. Those blood tests every few months and yearly trips to Minnesota for a bone marrow biopsy will continue for Ethan.
But this very public figure continues to use his platform to not only help his own son, but other families battling this particular rare disease.
“We accepted it in that God doesn’t put more on your plate than you can handle,” Fisher said. “Everybody has issues in their life. And we know this is a very serious one, but life goes on.
“It’s not going to control us. We’re going to control it. We look at it like an opponent. We’re gonna beat it.”