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Florida State’s Jimbo Fisher, Virginia’s Mike London connected by rare disease called Fanconi anemia

November 18, 2011

By Steve Yanda

Tallahassee — In the moments after Candi Fisher got the phone call with the diagnosis, the spaghetti she had been cooking for dinner became unimportant. So she left it on the stove, hopped into her car and drove a few blocks to a path that led into the woods. Out of the car and into the dusk, she ran, barefoot, crying and screaming her husband’s name.

Jimbo Fisher, the Florida State football coach, was driving their two sons around a pond in a golf cart when he heard his wife’s voice. Seventeen days earlier, their youngest boy, 6-year-old Ethan, had been tested for a rare blood disorder, and Jimbo knew the results were due back soon.

“It’s positive?” he asked his wife.

“Yeah,” she said.

More than 4.2 million births occur each year in the United States; roughly 31 of those children are born with Fanconi anemia, a blood disease that slowly, stealthily causes bone marrow failure. There is no known cure, and doctors estimate it will be three to five years before Ethan’s body is ready for a bone marrow transplant.

On Saturday night, Jimbo Fisher will lead his Seminoles against a Virginia team coached by Mike London. Eleven years ago, doctors discovered that London’s daughter, Ticynn, had Fanconi anemia. That two families with fathers in such an exclusive profession — and in the same conference, no less — could be struck by the same unusual affliction is remarkable.

That one of them has come through the harrowing experience successfully offers hope to the other. Ticynn London celebrated her 16th birthday this month.

Ethan Fisher and his family, meantime, remain in a torturous waiting period that began on that Monday in late March.

“You feel like everything can be cured, everything can be treated,” Candi Fisher said. “As a parent, you don’t ever want to let your mind go to ‘There actually is something that could happen to my child that can’t be fixed.’ And then when you hear that’s a possibility, it’s kind of like the rug’s pulled out from under your feet, and you’re in quicksand.”

Constant worries

Regina London lived in that quicksand for more than three years, its effects evident from the outset. At first her trepidation was confined to her oldest daughter, Ticynn, who was discovered to have Fanconi anemia in January 2000.

An inherited disease, Fanconi anemia eventually leads to bone marrow failure. When that occurs, the body stops producing the number of blood cells it needs to survive. And so Regina learned to be vigilant in monitoring Ticynn’s every move, for the slightest bruise, infection or illness could be the one that overwhelmed her daughter’s blood regulatory system.

Five weeks after the diagnosis, after a search of the national bone marrow registry came up empty, Regina learned her husband, Mike, then an assistant at Boston College, was nearly a perfect match for Ticynn. The Londons were told at the time that the odds of an African American parent being a suitable bone marrow donor for his or her child is 10,000 to 1. Mike London was the one.

As exhilarating as that news was, it also doubled Regina’s fretfulness.

“We knew that Mike was going to be the donor for her, but if something happened to Mike, we didn’t know where we would be,” Regina said. “And he traveled all the time for recruiting. If he got in a car accident . . .”

Regina asked Ticynn’s doctors if, in the event Mike did get into a car wreck, they could keep him alive long enough to extract his bone marrow.

The doctors “looked at me like I was crazy, and I was like: ‘No, you don’t understand. This is her life. If something were to happen to him, then that ruins her chances,’ ” Regina said. “If he got sick or if he developed anything, then that would ruin her chances. I said it in a jokingly way, but I was serious.

“Mike said, ‘Why did you take it all the way there?’ I had to. ‘What happens if something happens to you? Where would we stand?’ ”

The doctors never answered Regina’s question, but from that moment forward, Mike said, he was hyper-cautious in his actions. Whenever he needed to shave in the coaches’ locker room, he used a new razor, lest he accidentally pick up someone else’s. When he got in his car, he put his seat belt on before turning the ignition.

Ticynn seemed to best handle the waiting for a bone marrow transplant. Other than displaying occasional lethargy, she acted like any other kid during those three years. That is Fanconi anemia’s cruelest side effect: Everything seems normal.

“The most anxious moments are always the moments when you go take her to the doctor and have them draw blood to see where her counts are,” Mike said. “You’re hoping deep, deep down inside that some miraculous miracle will occur and those numbers will shoot back up and that they would say: ‘You know what? She’s fine now.’

“But the reality of it is her numbers were at a level that said she was okay, and we decided to have the transplant when she was at a level that said she was okay, rather than [waiting for her blood counts to plummet] and then try to do it. The timing of everything worked out.”

On April 29, 2003, Mike London, who by then was an assistant at Virginia, donated his bone marrow to try to save his 7-year-old daughter’s life.

It worked. Ticynn London just finished volleyball season at St. Anne’s Belfield School in Charlottesville.

A normal 6-year-old

Had Fanconi anemia not become a facet of her everyday life, Candi Fisher would struggle to discern the difference between her youngest boy, Ethan, and every other 6-year-old she has encountered.

One Thursday morning in mid-October, Ethan got off to a rough start. Candi has learned that her son starts to wear out toward the end of the week, and on that day, Ethan had decided he didn’t want to go to school. A tantrum ensued.

Consequently, Candi arrived a few minutes late to a board meeting for the nonprofit charitable foundation she and Jimbo started in August after deciding to take their fight against the disease public. They called it the Kidz 1st Fund, and in two months it raised more than $425,000 for Fanconi anemia treatment research.

Later that afternoon, Candi picked up older son Trey, 10, and Ethan from school. When they arrived home, the boys munched on some Halloween candy, and then Ethan grabbed his baseball glove and a foam ball. He started throwing the ball from the living room at a hallway wall. He used to play organized baseball, but not anymore.

“First I’ve got to warm up,” Ethan said, “and then I just throw fast.”

He estimated he could throw that foam ball 99 mph, and the whap! whap! whap! sound the ball made against the wall seemed to provide enough confirmation.

That evening, Trey went to baseball practice while Candi and Ethan paid a visit to the Florida State marching band. The Marching Chiefs — all 460 of them — had agreed to join the national bone marrow registry, though that didn’t impress Ethan. He wanted to watch the end of Jimbo’s football practice on an adjacent field.

When Ethan finally got there, he was so intent on finding a football to toss around that he missed seeing his father as the coach came off the field. By the time he got back in Candi’s car to go pick up Trey, Ethan had moved past his disappointment. He slipped, instead, into the stream of consciousness of a perfectly fine and happy little boy.

“Three people in my class have May birthdays,” Ethan told his mother from the back seat. “How come we’ve never been to a tennis court before?”

Facing the unknown

A few days later — nearly seven months after Ethan’s disease was diagnosed — Candi Fisher picked up the phone and called, for the first time, Regina London, one of the few people who could completely empathize with her new reality.

Candi explained why she hadn’t called sooner, that in the immediate aftermath of the diagnosis she had been scared to talk to someone who had been through Fanconi anemia.

Regina explained why she hadn’t reached out to Candi. Her experience had ended positively, but she didn’t want Candi to feel as if she was telling her exactly what was going to happen. No one knows that.

Then the two mothers spoke for nearly an hour and a half. They talked about how neither Candi nor Jimbo has been tested to see if they are a bone marrow match, because the doctors are confident there will be plenty of suitable donors in the national registry when it comes time for Ethan’s transplant.

They talked about the waiting, and the disquiet it creates.

Since their experience with Ticynn, the Londons have been persistent supporters of the national bone marrow registry. Mike London, who was hired as Virginia’s head coach in December 2009, has hosted donor registry drives the past two Aprils. The family also plans to start a charitable foundation to promote bone marrow registry participation.

The success rate of bone marrow transplants for Fanconi anemia patients has increased from 30 percent to roughly 85 percent in the past 15 years, according to Margaret MacMillan, a pediatric surgeon who specializes in Fanconi anemia treatment at the University of Minnesota. But the effects of the disorder do not cease with a successful transplant.

There is no known cure. Beverly Mayhew, executive director of the Fanconi Anemia Research Fund, said those who suffer from the disorder are 500 to 700 times more likely than the general population to acquire head or neck cancers.

The waiting — for Ethan’s bone marrow system to fail, for the transplant, for everything that might occur even further down the road — can be overwhelming at times, Candi said.

With Florida State on its bye week in early October, the Fisher family traveled 40 miles northwest to Bainbridge, Ga., where Trey played in a baseball tournament. It was the first time they had returned to that ballpark since March 27, the day before they received the diagnosis of Ethan’s disease.

Sometimes, Candi said, subtle things such as returning to the Bainbridge ballpark will trigger memories of the night her life changed forever. All of a sudden she’s running barefoot and crying through the woods again, trying to find her husband and kids to relay news they never wanted to hear. And then the waiting begins anew.

“It literally can almost be like a kick in the stomach, and you have to make yourself push through it,” Candi said. “Remember that we’re doing this so we can try to prolong that day, or so that when that day comes, the treatment is better or the success rates are higher. It makes me want to push harder in this area to make that day — maybe lessen the unknown. A little bit.”

 Source: The Washington Post

NFL Star Xavier Rhodes Partners with Florida State Coach Fisher to Fight Fanconi Anemia

Minneapolis, Minn. –Tuesday, July 5, 2016 — Minnesota Vikings cornerback and former Florida State star Xavier Rhodes announced today his partnership with Kidz1stFund, the foundation created by his college coach, Jimbo Fisher, and Candi Fisher with the mission of raising research money for Fanconi anemia — a rare blood disease with no cure that affects the Fishers’ younger son, Ethan, and 1 in every 131,000 people born in the US each year.  The leading research for the disease is being conducted only a few miles away from Rhodes’ US Bank Stadium locker at the University of Minnesota Masonic Children’s Hospital.

Rhodes is entering his fourth season with the Vikings and is already proving to be a force on the gridiron. He is taking that same competitive approach in the fight against Fanconi anemia. Rhodes starred for Fisher’s Seminoles from 2010 to 2012 before being selected in the first round of the 2013 NFL Draft. Like many of the players on the FSU roster, Rhodes spent considerable time with Fisher’s sons, Trey and Ethan, and was a member of the team when Ethan was diagnosed in 2011.

“Coach Fisher and Candi created a special bond with all of the players,” Rhodes said. “Being a Seminole means you are forever a member of one big family. Coach Fisher taught me so much on and off the field — and it is a privilege to support Kidz1stFund by using my platform in the NFL to raise awareness for the fight against Fanconi anemia.”

Fisher is equally moved to partner with his former star defensive back, who plans to serve as a foundation spokesperson and remain actively involved with Ethan and other children affected.

“I can’t tell you how much it means to me to see former players like Xavier step up to support my family and make a difference in our fight for a cure,” Fisher said. “Xavier is a phenomenal man and I am so grateful for his kindness and support. He reached out to us and told us he wanted to know how he could make a difference and I was blown away by his commitment.  The Vikings and Minnesota are blessed to have someone that gives back to the community, but that is just who he is. I look forward to seeing him continue to excel on and off the football field.”

Since its inception nearly five years ago Kidz1stFund has donated $3.5 million directly to research for the Fanconi Anemia Comprehensive Care Program at the University of Minnesota. While all Fanconi anemia patients will ultimately need a bone marrow transplant to prolong life, research advancements have led to a higher life expectancy — from early 20’s to about 33 years old. Kidz1stFund has also sponsored bone marrow drives adding approximately 5,000 people to the National Bone Marrow Registry; eight of those individuals were selected as a match and have donated to save the life of a patient in critical need.

To learn more about Fanconi anemia or how to support Xavier’s cause, Kidz1stFund, please visit www.Kidz1stFund.com or contact info@Kidz1stfund.com.

FSU coach considered leaving after son’s diagnosis

TALLAHASSEE — Jimbo Fisher was at the top of his profession for one year when a family crisis had him thinking he may have to walk away from his dream job.

Fisher’s youngest son, Ethan, then six weeks shy of his 6th birthday, was diagnosed with a rare, life-threatening disease in March 2011, just three months after Fisher completed his first season as head football coach at Florida State.

Suddenly, a man whose job forces him to be prepared for every opponent, had no game plan for the biggest challenge of his life.

Fisher felt vulnerable and wondered if the best thing for him and his family would be for him to step down as head coach.

“Yeah, it did cross my mind, without a doubt,” Fisher revealed last month for the first time in an exclusive interview with the Palm Beach Post. “I didn’t know what (Ethan’s condition) required, what it meant. ‘Should I coach? ‘Should I not coach?’

“I don’t know if we ever got to that point where we thought about it seriously but it crossed my mind to think about that because I didn’t know until we found out everything.”

Devastated by the news, Jimbo and his wife, Candi (they divorced in December after 22 years of marriage), had one thing on their minds: Finding the best care for their son.

“We started researching. It was tragic,” Fisher said. “The material was a little bit out of date but everything was doom and gloom. There was no hope, no chance, no nothing. It really knocked us for a loop.”

Fanconi anemia, a rare genetic disorder, causes bone marrow failure, a very high risk for leukemia and other cancers. Life expectancy remains around 35 years old but that number is rising.

Fisher took a short break from spring football that year while he and Candi researched the best way to ensure Ethan received the best care. After visiting several clinics and hospitals, including the University of Minnesota Masonic Children’s Hospital where Ethan now goes for his yearly checkups, Jimbo and Candi made the decision that the best thing was to use his coaching platform to raise awareness for the mysterious disease, which right now has no cure.

“That spring I was distracted,” Fisher said. “I was in practice and I would catch myself every now and then thinking about something. I have never done that before but I did occasionally that spring.

“I thought, ‘how am I going to do it? Am I doing it justice not being with him as much and feeling guilty every time? We got to learn to manage and every second I got a chance to be with my family, that’s what I’m going to do.”’

James Coley, Fisher’s offensive coordinator at the time, recalls sitting in a staff meeting in which Fisher was not present and discussing with fellow coaches what their boss was facing.

Tears, he said, filled the eyes of every coach.

“His whole world was rocked,” said Coley, who recently joined the Georgia staff as receivers coach after three years as the offensive coordinator at the University of Miami.

“You’re talking about a guy who loves his children like no other. They’re his life. When he got the information he was destroyed.”

Coley, who remains close to Fisher, was not sure what the future would hold and knew his head coach was thinking about stepping down.

“There is no gray area with Jimbo,” Coley said. “His family is first. He’s not a guy where his profession is his top priority. His boys are his priorities.

“He’s one of the toughest men I’ve been around. Even though he was shook he came to work, he kept himself going. People who knew him really well, you know he was hurting inside.”

Candi suggested starting a foundation and using Jimbo’s platform to help raise money. Now, about 4 ½ years later, Kidz1stFund has raised $3.5 million and, according to Dr. Margaret MacMillan, a bone marrow physician and professor of pediatrics at the University of Minnesota, has been a game-changer for Fanconi anemia research.

Needless to say, Fisher is convinced he made the right decision.

“I don’t think anybody could have coached that year the way he coached that year,” Coley said.

With Candi devoting her time to Ethan’s care and the foundation, Jimbo learned to compartmentalize. He knew he had an obligation to his family first and team second.

And it worked. Two seasons later Fisher was at the pinnacle of his profession as Florida State completed an historic undefeated season that culminated in a national championship.

And along for the ride was Ethan. … for the games and the confetti filled celebrations.

“Just had to do what you had to do,” Fisher said. “That’s the way I was raised. You can’t feel sorry for yourself because it’s unfair to the kids I’m coaching.”

Last June, Jimbo and Candi released a statement announcing their separation after 22 years of marriage. Their divorce was finalized in December. And while the couple was going their separate ways, they remain united on their commitment to their children, Ethan and Trey, 14.

“That was never going to be an issue because we both love our kids,” Jimbo said. “That was never going to be a sacrifice. (We said) ‘We got to work it out and how are we going to work it out and do what we got to do.’

“Everything was about the kids.”

The 2015 season presented more challenges for Fisher off the field.

The couple was awarded joint custody with Jimbo getting the boys Thursday after school through Sunday. Jimbo missed his kids, although he was comforted knowing they were close by (Candi still lives in Tallahassee) and Ethan was in good hands.

“It did pull at me,” he said. “But I knew he was taken care of. She’s a great mom, tremendous mom, loving. But any spare moment that was what I did, went to see my kids.

“Any time I’m away from my kids it hurts because at the end of the day that’s what it’s all about.”

Article Source: http://www.mypalmbeachpost.com/news/sports/college-football/jimbo-fisher-considered-giving-up-fsu-job-after-so/nq7yD/

Rose Bowl Competitors Fight for Same Outcome – A Cure

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.

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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 laura@fanconi.org or 541-687-4658. Media materials may be obtained at www.fanconi.org/press.

Contact Information: 

Laura Hays, PhD

Executive Director, Fanconi Anemia Research Fund

laura@fanconi.org

541-687-4658

www.fanconi.org/press

Kidz1stFund

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.

Contact Information: 

The Zimmerman Agency

Kidz1stFund@zimmerman.com

850-668-2222

www.Kidz1stFund.com/press

Motocross Champion, Ricky Carmichael, and No. 1 College Football Coach, FSU’s Jimbo Fisher, Team Up in Dallas to Fight Fanconi Anemia

DALLAS – Aug. 28, 2014 – As Florida State University head football coach Jimbo Fisher readies his national championship team for this weekend’s season opener in Dallas, he’s also teaming up with motocross champion Ricky Carmichael to raise awareness for Fanconi anemia (FA) – a rare and incurable blood disorder affecting Jimbo’s younger son, Ethan, and an 11-year-old motocross enthusiast from Texas named Gage Klein.

Jimbo and his wife, Candi – who spearhead Kidz1stFund to raise awareness and treatment options for FA – will join Gage, and his family on the field at AT&T Stadium for a pre-game surprise on behalf of Carmichael.

“When the Fishers shared Gage’s FA story with me earlier this year, how his beloved race jersey is boxed up and his dirt bike is now retired in the rafters of his dad’s shop, I knew I needed to get personally involved,” said Carmichael. “My connection with the Fishers goes beyond our love for the Seminoles and my hometown, Tallahassee. They are my friends and their Kidz1stFund is a foundation I truly believe in.”

When the Fishers introduced Carmichael to Gage, he invited the entire family to the 2014 Dallas Supercross – where Gage enjoyed exclusive access onto the stadium’s race track and met one-on-one with Carmichael and many other motocross idols for pictures and autographs on the winner’s podium. Gage also sat alongside race trainers and crew in press box seats during the big races that evening.

Gage’s appearance on the kick-off game field with Ethan in Dallas, as well as the FSU football team wearing “I Fight Fanconi” Kidz1stFund helmet decals during the season opener, are both to show continued support in the fight against FA.

“Candi and I are overwhelmed with gratitude at Ricky’s incredible efforts to spread the word about Kidz1stFund and personally make a difference in the lives of those living with FA,” said Coach Fisher.

Ethan and Gage are 2 out of 130,000 people annually affected with FA, leading to birth defects, bone marrow failure and cancer diagnoses. Nearly 100 percent of patients need very risky bone marrow transplants before adulthood, and even then, survivors have an average life expectancy of 29 years old.

“Time is not on our side, and every move we make brings us one step closer to finding a cure for FA,” said Candi. “The amount of support we’ve received over the years is incredible, and it only continues to grow.”

In just three years, Kidz1stFund has donated more than $2.1 million to the University of Minnesota Children’s Hospital, the largest treatment center for FA patients (like Ethan and Gage) in the country.

Coach Bobby Bowden Reddit AMA Supporting Kidz1stFund

LEGACY FSU FOOTBALL COACH, BOBBY BOWDEN, TO HOST LIVE REDDIT AMA
IN SUPPORT OF KIDZ1STFUND

TALLAHASSEE, Fla., (Aug. 13, 2014) – Florida State University football coaching legend, Bobby Bowden, will host a Reddit ‘Ask Me Anything’ (AMA) hour long session on Aug. 19,

9 to 10 a.m. EDT, in support of Kidz1stFund – a nonprofit foundation created by current FSU head football coach Jimbo Fisher, and his wife, Candi. Bowden will provide live responses to fan questions while raising awareness toward the fund’s fight against Fanconi anemia (FA), a rare blood disease affecting the Fisher’s younger son, Ethan.

After Ethan was diagnosed in 2011, the Fishers spearheaded Kidz1stFund in hopes of improving treatment options, raising national awareness and helping to fund research that will ultimately lead to a cure for FA. Since launching their public battle against FA, the Fishers teamed up with Bowden to help spread the word on the rare medical condition, affecting 1 in 131,000 people annually.

“Candi and I are so grateful for Coach Bowden’s support and dedication to Kidz1stFund,” Coach Fisher said. “His famous voice continues to raise awareness about Fanconi anemia and our fight for a cure.”

Bowden’s Reddit AMA will provide fans with the chance to ask the most-winning college football coach questions covering a wide range of topics, from highlights of Bowden’s 33-season FSU coaching career to his favorite cereal.

Fans are encouraged to log on at 9 a.m. EDT, Aug. 19, to Reddit’s College Football Section at reddit.com/r/cfb.

To make a contribution or learn more about the fight against Fanconi anemia, visit www.kidz1stfund.com or contact kidz1stfund@zimmerman.com.

About Kidz1stFund

FSU Football Coach Jimbo Fisher and wife, Candi, created Kidz1stFund when they were told their son had a rare blood disease called Fanconi anemia (FA). The Fishers created the fund to help their son and the many others whose lives have been changed by this disease by providing support to families affected by FA, enabling education and awareness about this disease and raising money for FA research in the hopes of finding a cure. To learn more, visit https://www.kidz1stfund.com.

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Legacy FSU Football Coach, Bobby Bowden, To Host Live Reddit AMA

In Support Of Kidz1stFund

 

TALLAHASSEE, Fla., (Aug. 13, 2014) – Florida State University football coaching legend, Bobby Bowden, will host a Reddit ‘Ask Me Anything’ (AMA) hour long session on Aug. 19, 9 to 10 a.m. EDT, in support of Kidz1stFund – a nonprofit foundation created by current FSU head football coach Jimbo Fisher, and his wife, Candi. Bowden will provide live responses to fan questions while raising awareness toward the fund’s fight against Fanconi anemia (FA), a rare blood disease affecting the Fisher’s younger son, Ethan.

After Ethan was diagnosed in 2011, the Fishers spearheaded Kidz1stFund in hopes of improving treatment options, raising national awareness and helping to fund research that will ultimately lead to a cure for FA. Since launching their public battle against FA, the Fishers teamed up with Bowden to help spread the word on the rare medical condition, affecting 1 in 131,000 people annually.

“Candi and I are so grateful for Coach Bowden’s support and dedication to Kidz1stFund,” Coach Fisher said. “His famous voice continues to raise awareness about Fanconi anemia and our fight for a cure.”

Bowden’s Reddit AMA will provide fans with the chance to ask the most-winning college football coach questions covering a wide range of topics, from highlights of Bowden’s 33-season FSU coaching career to his favorite cereal.

Fans are encouraged to log on at 9 a.m. EDT, Aug. 19, to Reddit’s College Football Section at reddit.com/r/cfb.

To make a contribution or learn more about the fight against Fanconi anemia, visit www.kidz1stfund.com or contact kidz1stfund@zimmerman.com.

 

About Kidz1stFund

FSU Football Coach Jimbo Fisher and wife, Candi, created Kidz1stFund when they were told their son had a rare blood disease called Fanconi anemia (FA). The Fishers created the fund to help their son and the many others whose lives have been changed by this disease by providing support to families affected by FA, enabling education and awareness about this disease and raising money for FA research in the hopes of finding a cure. To learn more, visit https://www.kidz1stfund.com.

 

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FOR MORE MEDIA INFORMATION:

THE ZIMMERMAN AGENCY

KIDZ1STFUND@ZIMMERMAN.COM

(850) 668-2222

www.kidz1stfund.com/press

Florida State Chapter of Uplifting Athletes

TALLAHASSEE, Fla. — Upon his arrival at Florida State just a few weeks prior to the start of the 2012 season, Penn State transfer Kevin Haplea knew that he wanted to make his presence felt both on and off field at his new program.

The on-field part was a given. A late addition to the roster, Haplea immediately provided much-needed experience to a tight end position that lacked much of that characteristic. The off-field aspect, though, wasn’t quite as easy. Haplea knew he wanted to make a positive impact — and he had a pretty specific idea of how — but finding the necessary time to introduce and integrate his plan wasn’t feasible with his time spread thin between football, school and adjusting to a new life in Tallahassee.

But sometimes, things have a strange way of working out. And when Haplea learned in June that his senior season had ended before it ever started because of an off-season ACL tear, FSU’s No. 2 tight end knew what he had to do.

A member of Penn State’s Uplifting Athletes chapter, Haplea had always wanted to orchestrate the creation of a chapter at Florida State.

“I thought this was a great way to bring a positive out of my injury,” Haplea said.

Uplifting Athletes is a non-profit organization that raises awareness and funds for rare and under-served diseases. The organization has a liaison at the national chapter but is run at each school solely by football student-athletes, who are not only responsible for the organization of their particular chapter but for the marketing and fund-raising efforts as well.

“It’s really good for us to not only get involved for something that is bigger than ourselves and football but it gives us a lot of good experience working in the real world and business experience,” Haplea said. “It’s just really beneficial to everybody involved.”

At Penn State, Haplea worked with the Nittany Lions’ chapter to raise funds and awareness for kidney caner. At FSU, Haplea wanted the ‘Noles’ Uplifting Athletes focus to be on Fanconi anemia, a rare blood disease that affects thousands of children each year — including FSU coach Jimbo Fisher’s youngest son, Ethan.

Fisher and his wife, Candi, set up the Kidz 1st Fund to aid in the fight against Fanconi anemia and Haplea wants Uplifting Athletes to help in that on-going battle.

“We are on such a big stage as college football players and especially here at Florida State we have a lot of national attention,” Haplea said. “When we talk our voices are heard so we can do a lot of good with this and I think it’s definitely going to go a long way.”

Added Fisher: “You can change the world and you can take the platform you have with athletics and really turn it into something great. Kevin has done that and he’s a tremendous young man.”

Source:http://www.upliftingathletes.org/ua-news/florida-state-chapter-started-honor-coachs-son

Kidz1stFund-Sponsored Bone Marrow Donor Drive Kicks-Off the 2013 Football Season

128 FLORIDA STATE ATHLETES, SPIRIT GROUPS AND MARCHING CHIEF MEMBERS GET SWABBED FOR NATIONAL MARROW DONOR REGISTRY

Tallahassee, Fla.  – Florida State coach Jimbo Fisher and wife Candi kicked off the 2013 football season with a Kidz1stFund-sponsored Bone Marrow Donor Drive with FSU student-athletes, spirit groups and the band on Friday.  Invitations were extended to all student-athletes for the voluntary drive along with members of the Marching Chiefs and Seminole cheer and dance teams and 128 volunteers underwent the oral swab to register as donor matches for patients with varying diseases including Fanconi anemia that require a bone marrow transplant.

The Fisher’s first donor drive in 2011 registered over 100 Florida State football players and ended the year with almost 800 new entries to the registry.  By May of 2012, Kidz1stFund-sponsored donor drives surpassed the previous year’s total providing over 1,700 new donors to the registry.  In addition, the foundation uses the power of social media to raise mass awareness about the importance of joining the registry and saving lives.

In the spring of 2011, Ethan Fisher was diagnosed with Fanconi anemia (FA), a rare and serious blood disease.  Jimbo and Candi began Kidz1stFund later that fall to raise awareness and FA research dollars at the University of Minnesota Amplatz Children’s Hospital in hopes of finding a cure.  Patients with FA may have a variety of health issues including short in stature, dark and light areas of skin, abnormalities of the arms and hands, kidney problems, heart defects, hearing problems and many others.  Some patients have no physical manifestation, but nearly all will have a decline in their blood counts over time, eventually leading to bone marrow failure.  FA is something present at birth.  The FA genes are responsible for preventing cancer and bone marrow failure by repairing DNA damage that occurs in everyday life (from sun exposure, x-rays, chemicals in our food and surroundings).  Without this restorative ability, people with FA have a significantly higher chance of developing certain types of cancers at a much earlier age than the general population.

“We have made it one of our Kidz1stFund goals to increase the registry,” said Coach Fisher.  “We want to make sure that all patients needing an unrelated donor bone marrow transplant, like Ethan, will have the best chance possible to find a match when the time comes.”

Candi followed with, “Thousands of patients across the country diagnosed with cancers such as leukemia and lymphoma, and blood disorders like sickle cell, Fanconi anemia, and many other life-threatening diseases, there are approximately 70 diseases in all, are in need of a bone marrow transplant.  I am so very proud of these selfless young men and women from Florida State for joining the registry and becoming part of every patient’s search for a bone marrow donor.”

On Friday, Jimbo and Candi were joined by student volunteers from the FSU College of Medicine along with former FSU football star and 2012 FSU College of Medicine graduate, Dr. David Castillo.  Castillo earned two undergraduate degrees while playing football for the Seminoles including starting at center as a junior and senior.  FSU medical school student volunteers were on hand at the bone marrow donor drive to assist in the cheek swab registration process.

“I am proud to be here today to support the Fishers and Kidz1stFund in their effort to increase the national bone marrow registry,” said Dr. Castillo.  “As a physician, I understand all too well the extreme challenges Ethan Fisher will endure in the coming years, having to face an exceptionally risky bone marrow transplant from an unrelated donor as well as the constant scans for cancer as a result of his FA.  I encourage everyone to join the registry and help those in need of a bone marrow transplant.  It’s not every day a person gets the chance to save a life.”

To be a part of the national movement by joining the National Marrow Donor Program (NMDP) “Be The Match” registry, you must be between the ages of 18-44, meet the health guidelines and be willing to donate to any patient in need.  Research shows that younger donors are best for patients because they provide the greatest chance for transplant success.  Donors with diverse racial or ethnic backgrounds are especially critical.  If you match, most donations are done through an automated blood donation, similar to a blood transfusion, with no surgery needed.

If you would like to know more about the bone marrow donation process, visit www.marrow.org.

 

Rashad Greene registers for National Marrow Donor Registry

 

FSU and Pitt Announce Kidz1stFund Helmet Decals For Labor Day Game

FSU Head Coach Jimbo Fisher and Pitt Head Coach Paul Chryst Join to Fight Fanconi Anemia

Aug 23, 2013

Tallahassee, Fla. –When the Florida State Seminoles and Pittsburgh Panthers open their 2013 college football seasons versus one another on Labor Day, the teams won’t only be fighting for the first victory of the young season. The two squads will join forces to fight for a very personal cause for FSU head coach Jimbo Fisher. Both schools announced today that they will each wear a special ‘I Fight Fanconi’ Kidz1stFund decal on the back of their helmets during the nationally televised ESPN broadcast.

In the spring of 2011, Jimbo and Candi Fisher’s youngest son Ethan was diagnosed with Fanconi anemia, a rare and serious blood disease.  The Fisher’s began Kidz1stFund later that fall to raise awareness and FA research dollars at the University of Minnesota Amplatz Children’s Hospital in hopes of finding a cure.

Pittsburgh head coach Paul Chryst felt especially drawn to help the Fisher’s and Kidz1stFund after the story of 2-year-old Logan Stevenson became national news. The terminally ill boy from western Pennsylvania, about 25 miles outside of Pittsburgh, served as the best man in his parents wedding before passing away on August 6. Logan was born with Fanconi anemia and shortly after his first birthday diagnosed with acute myeloid leukemia.

“I thought it was a tremendous gesture by Coach Chryst and the University of Pittsburgh for suggesting that we wear the decal,” said Fisher. “Candi and I and our foundation can’t be anymore thankful as this will continue to bring awareness for the fight against Fanconi anemia that affects many. I can’t thank the University of Pittsburgh enough for such a great idea.”

“In talking to Jimbo this summer, we felt our ESPN nationally televised primetime opener was the perfect opportunity to help build awareness about Fanconi,” said Chryst. “Awareness and education will hopefully lead to more impactful research and funding that will eventually lead to a cure. College football really is like an extended family and we are proud to team with fellow ACC member Florida State on this tremendously important effort.”

Patients with FA may have a variety of health issues including short in stature, dark and light areas of skin, abnormalities of the arms and hands, kidney problems, heart defects, hearing problems and many others.  Some patients have no physical manifestation, but nearly all will have a decline in their blood counts over time, eventually leading to bone marrow failure.  FA is something present at birth.  The FA genes are responsible for preventing cancer and bone marrow failure by repairing DNA damage that occurs in everyday life (from sun exposure, x-rays, chemicals in our food and surroundings).  Without this restorative ability, people with FA have a significantly higher chance of developing certain types of cancers at a much earlier age than the general population.

Source: Seminoles.com

Fisher Joined by Saban, Bowden at Kidz1stFund Event

TALLAHASSEE — Florida State head football coach Jimbo Fisher and his wife, Candi, teamed up with two legendary college football coaches on Sunday evening for a private fundraiser at Fleming’s Steakhouse in Birmingham, Ala., benefitting Kidz1stFund to raise funds for Fanconi anemia research, the rare disease that affects their son, Ethan.

“Candi and I are very thankful to the Bowdens and Sabans for joining us in our fight against Fanconi anemia,” Fisher said. “Their support means a lot to our family. Coach Bowden and Coach Saban have both been very influential not only in my coaching career but in my life. We thank them and all of the supporters in Birmingham who turned out for the event.”

The Fishers were joined by former FSU coach Bobby Bowden, his wife, Ann, and current Alabama coach Nick Saban and his wife, Terry. Bowden, Fisher and Saban have been a part of multiple national championship winning teams, combining to possess seven championship rings.

Sunday night’s event was attended by almost 225 generous Birmingham supporters who were moved by the Fishers’ emotional story of their battle to help their son, inspired by Bowden’s wise words of wisdom and energized by Saban’s message of hope. Through the combined efforts of these celebrated coaches, the Fishers’ Kidz1stFund received close to $100,000 in donations for research.

“With Candi being from the state of Alabama as well as my playing days at Samford, in particular, the city of Birmingham has become a second home to us. We thank them for embracing our family and supporting the fight against FA.”

During the live auction portion of the event, the Sabans were so motivated that Terry surprised the audience by offering two seats in her football suite for any home Alabama game. The Birmingham crowd responded enthusiastically with several thousand dollars in bids.

“We are happy to support Jimbo and Candi at their fundraiser for Kidz1stFund,” Terry Saban said.

“This is obviously something that has directly affected their family as well as many others and we are happy to do our part to help in the battle against and, hopefully, finding a cure for FA,” Coach Saban added.

Led by Candi Fisher, Kidz1stFund raises awareness and research dollars for the life threatening and incurable genetic blood disorder called Fanconi anemia, or FA. FA was diagnosed in the Fishers’ younger son, Ethan, in the spring of 2011 after Coach Fisher’s first season as head coach at Florida State. The incidence rate, or the likelihood of a child being born with FA, is about 1 in 131,000 in the U.S. and the median age of survival is 29 years.

Fanconi anemia patients do not repair their DNA well which leads to bone marrow failure. Since the Fisher’s elder son Trey is not a match, Ethan’s transplanted bone marrow will come from an unrelated donor. Currently, an unrelated bone marrow transplant for an FA patient has an 80% survival rate. FA patients are also 300,000 times more likely to get cancer in their early years than those without FA.

Kidz1stFund’s goal is to raise $500,000 by December of each year for the University of Minnesota Amplatz Children’s Hospital. To date, the fund has donated over $1 million dollars to the Fanconi Anemia Comprehensive Care Program, which treats more Fanconi anemia patients needing blood and marrow transplantation than all other hospitals in the country combined. With the research dollars from Kidz1stFund, researchers at the University of Minnesota are working to help FA patients survive and thrive after bone marrow transplants.

Time is not on Ethan Fisher and those with FA’s side. With help from the Sabans and the Bowdens, Kidz1stFund is able to reach a new audience, educating others about FA as well as raising much needed research dollars to find a cure.

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Kidz1stFund: Jimbo & Candi Fisher’s Kidz1stFund is dedicated to raising awareness and research dollars for Fanconi anemia, the rare disease that affects their younger son, Ethan. Dollars raised through generous donations, online contributions, merchandise, and during special events go toward finding better treatments and ultimately a cure for this life threatening disease.