August 29, 2012
This August marks exactly one year since FSU football’s head coach Jimbo Fisher and his wife Candi started the Kidz1st Fund to fight for a victory unattainable in Doak Campbell Stadium.
In 2011, the Fishers received news that their youngest son, 7-year-old Ethan, was diagnosed with Fanconi Anemia (FA), a rare genetic disease that decreases red blood cells, causes bone marrow failure and increases risk for cancers. To fundraise for a cure, the Fishers established in Aug. 2011 the Kidz1stFund, a non-profit foundation whose proceeds directly benefit research at the top FA research and treatment facility in the nation, the University of Minnesota’s Amplatz Children’s Hospital.
“It’s remarkable how much the fund has accomplished in just a year,” said Dr. Margaret L. MacMillan, Ethan’s doctor and co-director of the Fanconi Anemia Comprehensive Care Clinic at the University of Minnesota. “The fund has allowed us to focus our efforts, with more money available for research so we can get closer faster to the ultimate goal—a cure.”
$500,000 in research funding wasn’t the only help the Fishers’ fund garnered in the first year, though. After 37 individual donor drives, the fund added 1,710 names to the National Marrow Donor Database. One of the individuals who signed up because of Kidz1stFund also saved a life by donating marrow to a matched patient. “To me, that’s rewarding because another person out there has been helped by the benefits of the fund,” Fisher said. “Had we not done the drive, it may have taken longer to find a match, or it may not have happened at all.”
Thankfully, the horizon for treatment research of FA is bright, especially with increased funding. 15 years ago, the survival rate of patients with FA was 20 percent to 30 percent. Fifteen years later, the survival rate is 85 percent. The goal is now 100 percent. “The research takes time, but with help of funds been able to see the change happen sooner and maybe in a few more years it will be 100 percent,” said MacMillan, who will be speaking to FSU students this November about the rare disease. The doctor also notes researching Fanconi Anemia would not only improve quality of life for F.A. patients, but also sheds light on other diseases as well.
“I would like to say thank you to students who have done a wonderful job getting behind us,” Fisher said. “We are so grateful to those who help any way they can. Hopefully we will be supported for years and years to come. With support, we can find a cure.”
August 18, 2012
TALLAHASSEE — Jimbo Fisher‘s players gave him the perfect way to sum up a monumental shift in his life.
“They say it all the time … ‘YOLO,’ right? ‘You only live once,'” Fisher, Florida State‘s 46-year-old coach, said to a room of mostly young reporters who erupted in laughter when he name-dropped a popular hip hop anthem.
Instantly, the comment went viral.
“Did Jimbo Fisher really just say ‘YOLO’ in a news conference?” curious outsiders inquired on Twitter.
Yes, YOLO. It’s an acronym made popular by the 2011 chart-topping song “The Motto,” performed by hip hop artist Drake.
“You only live once, that’s the motto … YOLO, and we ’bout it every day, every day, every day,” Drake croons during the song’s catchy hook.
While Drake may have written those words to celebrate his wealth and excess, they have held a much deeper meaning for Fisher.
They have become a new way of life.
Fisher’s 7-year-old son, Ethan, is one of them. He’s also one of two people in Tallahassee living with the disease that slowly cripples a person’s bone marrow and platelet levels, which can trigger various forms of cancer and other life-threatening complications. With the disease, Ethan Fisher now has an estimated 29-year lifespan.
The Fishers have joined others throughout the nation searching for a cure.
As it now stands, Fanconi anemia has no true fix. Bone marrow transplants, medications and radiation treatments can delay and stunt the effects of the disorder, extending the life of patients, but there is no way to completely rid a person of its deadly long-term effects.
Thanks to Kidz1stFund’s partnership with the national Be The Match bone marrow registry, the Fishers also added 1,710 new names to the database of people willing to donate bone marrow to those in need. The newcomers included one person who has already provided bone marrow that saved a young cancer victim’s life. Additionally, Kidz1stFund’s bone marrow drives have registered more than 900 minorities, helping offset critically low numbers of registered minority donors, Candi Fisher said.
Bone marrow transplants can provide life-saving support for people suffering from at least 71 different diseases.
When speaking about an older Fanconi survivor, she unintentionally emphasizes that Ethan will get his transplant at the same Minnesota hospital he received his transplant. Doctors believe Ethan is about a year-and-a-half to three-and-a-half years shy of needing a bone marrow transplant.
He currently has no bone marrow donor match for a transplant. No one in the Fisher family is eligible to help extend his life.
Christopher Byrd didn’t have a relative who was a match, either.
But when his bone marrow readings began to slip 12 years ago, an unrelated donor became a match and provided his life-altering transplant.
Byrd is now 30, surpassing previous Fanconi anemia life projections by more than six years. The Orlando native, UCF graduate and attorney, currently lives in Tallahassee and has been active supporting organizations searching for a cure to the disorder
Jimbo and Candi Fisher’s Kidz1stFund celebrated its 1st anniversary and continues to thrive in reaching its mission.
Non-profit raises over $500,000 and starts legislative campaign in D.C. to raise awareness for Fanconi anemia.
Tallahassee, FL — On August 5th, Kidz1stFund celebrated one year of existence and achieved impressive fundraising, awareness and legislative goals in the fight against Fanconi anemia (FA).
Florida State University’s head football coach, Jimbo Fisher, and his wife, Candi Fisher, created Kidz1stFund after their youngest son, Ethan, was diagnosed with the rare blood disorder in 2011. FA is a genetic disease which causes possible birth defects, bone marrow failure, and eventually leads to cancer years earlier than the general population.
In the first year of the non-profit, over $500,000 was raised and donated to the University of Minnesota’s Amplatz Children’s Hospital, doubling the university’s current research budget for Fanconi anemia. The University of Minnesota was chosen because it treats more Fanconi anemia patients who need blood and marrow transplantation than all other hospitals in the country combined. “The funds raised by Kidz1st directly and immediately advance critical research for FA children,” said Margaret L. MacMillan, M.D., Co-director of the Fanconi Anemia Comprehensive Care Clinic at the University of Minnesota. “We are seeing remarkable improvements in transplant outcomes, and are advancing science to help kids with FA survive the long-term effects of their disease.”
In its short existence, the organization has not only raised a remarkable amount of money, but has also used social media outlets to increase awareness about the rare disease. With almost 7,000 “Likes” on Facebook and over 2,200 followers on Twitter, Kidz1stFund has been able to spread the word about ways people can contribute to the cause both financially and also through bone marrow donation.
Through the tireless efforts of the Fisher family, Kidz1stFund has added 1,710 new registrants (983 minority ethnicities, 727 Caucasians) into the National Marrow Donor Program in just its first year. A handful of people have been notified that they are possible matches for a patient in need and, miraculously, at least one child’s life has been saved as a result of a bone marrow transplantation that originated from a Kidz1stFund donor.
“Social media has been a key factor in spreading the word about FA worldwide. We have been able to let people know about fundraising opportunities, as well as shared personal stories of families all over the country fighting FA,” said Candi Fisher. “Once, we shared a picture of Olivia, who was recovering from her bone marrow transplant, and we were flooded with over 400 “Likes” and comments wishing the little angel a fast recovery. That is really encouraging for parents like us.”
Thankfully Kidz1stFund has not been in this fight to raise awareness alone; media outlets have joined in all year long to spread the word. Mainstream groups like the Huffington Post, ACC and ESPN have helped along with numerous statewide newspapers, blogs and magazines. A multitude of individuals, businesses, universities, clubs, and celebrities have joined in, even one Tallahassee high school student created a PSA pro bono for Kidz1stFund which has now been distributed to various states across the US for use on radio and TV.
However, the organization’s mission doesn’t stop here. In February, the Florida Senate and House passed a resolution recognizing Kidz1stFund’s efforts. And just this past July, Jimbo and Candi went to Washington D.C. to meet with various members of Congress, the Federal Drug Administration and the National Institute of Health to start discussions of allowing phase I clinical trials on children with life-threatening diseases and to bring to the attention the challenges faced by doctors when treating children with rare diseases.
Florida Representative C. W. Bill Young has been known for his support of the National Bone Marrow Program and was one of the members of the legislature who has committed to support Jimbo and Candi’s mission. “Families like the Fishers who are proactively working toward a cure for diseases like Fanconi anemia are not only providing hope for themselves, but also to all those who are affected by a multitude of disorders,” said Representative Young.
As for Ethan, his bone marrow aspiration this past March showed no further decline so for the time being he has been given the green light by his doctors to play on the local baseball team, hunt with his father and older brother, and participate in golf & swim camps this summer. While he continues to enjoy his childhood, his parents continue to create hope for him and thousands of others who are afflicted with the disease.
July 11, 2012
Representative C. W. Bill Young was honored to meet with the Head Football Coach of Florida State University, Jimbo Fisher and his wife Candi, to discuss the Kidz 1st Fund and their efforts to advance research for a cure to Fanconi Anemia. Founded by the Fishers in 2011, after their son Ethan was diagnosed with Fanconi Anemia, the Kidz 1st Fund seeks to advance research in and find a cure for this rare blood disorder. The Fishers were accompanied by Doctor John Wagner of the University of Minnesota who has been working closely with the organization and helping to treat Ethan.
The Fishers explained that patients with Fanconi Anemia experience a decline in blood count and eventually are subject to bone marrow failure, with some developing leukemia. Currently Fanconi Anemia is treated by attempting to replace faulty bone marrow cells with healthy bone marrow cells. This can be achieved through either bone marrow transplants or umbilical cord blood transfusion.
Representative Young has been a major supporter of advancing both techniques. In fact, in 1986, Representative Young was instrumental in the creation of the National Bone Marrow Program by ensuring the Navy had adequate resources to launch the initiative. This program not only reaches out to patients here in America, but also to those in countries worldwide, recently reaching 10 million volunteers and 50,000 transplants.
Florida State head football coach Jimbo Fisher and his wife, Candi, presented the check during Saturday’s Gophers basketball game.
By Andrew Krammer
March 5, 2012
The Gophers men’s basketball faithful gave a standing ovation Saturday during the team’s Big Ten regular season finale against Nebraska — and it had nothing to do with the team’s 81-69 victory.
Florida State football coach Jimbo Fisher and his family presented the University of Minnesota’s Amplatz Children’s Hospital with a check for $500,000 for Fanconi anemia research during the first half of the game.
Fanconi anemia is a rare, inherited blood disorder that affects roughly one in every 300,000 children.
The Fishers’ son, Ethan, was diagnosed with the disorder last spring in their home state of Florida. Ethan Fisher was on hand Saturday, along with mother, Candi, and his brother, Trey.
The Fisher’s presented their donation alongside former Florida State and current Minnesota Vikings quarterback Christian Ponder, Gophers men’s basketball coach Tubby Smith, University President Eric Kaler and leading University Fanconi anemia researchers Margaret MacMillan and John Wagner, among others.
The $500,000 doubles the University’s current research budget for Fanconi anemia.
“What research does is give hope,” MacMillan said. “What you want to know is that it is going to get better.”
This is the first major donation from the Kidz1stFund, which the Fishers established in August with the goal of funding a cure for Fanconi anemia.
The University of Minnesota takes care of more Fanconi anemia patients than any other hospital in the country, MacMillan said. But Kidz1stFund’s tight budget has relied on volunteer hours to fuel research.
“This will allow us to fund the current research,” MacMillan said. “A lot of the Fanconi anemia research we’re doing is unfunded — stuff our researchers have to do on the side.”
Ethan first visited the University and MacMillan in April for consultation, and the Fisher family quickly decided they wanted their son treated at the University’s Amplatz Children’s Hospital.
“We did a lot of research and discovered their operating budget wasn’t, in medical terms, a very large one,” Candi Fisher said. “They were operating on quite a shoe-string budget. We feel like what we’re going to give Saturday will hopefully be a game changer. And it’s just the beginning.”
The Fishers’ trip to Minnesota also included a meeting Sunday to discuss the use of the funds and meet the rest of the physician team. They also have appointments Monday and Tuesday to serve as Ethan’s one-year checkup since his diagnosis.
“This trip is obviously two-fold for us,” Candi Fisher said. “But, we hope to not only benefit Ethan [with the donation], but all the children who are affected by this disease.”
Specifically at the University, the survival rate 15 years ago for a patient needing an unrelated donor transplant was around 20 percent, MacMillan said. In 2012, the same transplant has an 85-percent survival rate at the University, she said.
“$500,000 sounds like a lot, and it definitely is a lot of money,” MacMillan said. “But it will be eaten up quickly. We would love to see that this is the beginning of something.”
With so much support in the first seven months of fundraising, the Fishers and the Kidz1stFund are already working on fundraising efforts for the upcoming football season.
Rebecca Kill, wife of Gophers football coach Jerry Kill, was also in attendance for the check presentation Saturday. Jerry Kill was with Mia Gerold, a 10-year-old with brain cancer, during a Make-A-Wish event Saturday.
“I wish I could be there,” Jerry Kill said in a statement. “There are so many people, many of them these young kids, who are battling things that are very difficult. It’s good to see people reaching out and helping each other to get through the tough times. It’s not easy for those kids and their families.”
MacMillan said athletics serves as an important window, not only to Fanconi anemia research, but to the University of Minnesota’s researching efforts in general, and that the Fishers’ efforts will serve as a learning platform for fundraising in the future.
While personal privacy is important, MacMillan said it is important for high-profile figures like the Fishers to use their name to promote fundraising for cures.
“I really give both Jimbo and his wife Candi a lot of credit for being able to talk about this openly and to allow everyone into a very difficult part of their life,” she said. “But by doing so, they understand they are reaching an audience of many people that would like to help.”
“It’s so rare that it is hard to get funding for,” MacMillan said. “That’s the bottom line.”
December 21, 2011
“During this holiday season, we want to give thanks to all of those who have contributed to our “kwest” for a cure at Kidz1stFund. We are incredibly thankful for the support you have given our family and others who are fighting Fanconi anemia (FA).
Although our family is battling this disease, we realize we are truly blessed with our faith, family and friendships. As you celebrate time with your loved ones, we ask that you consider giving the ‘Gift of Life’ to another person struggling with FA. Your donations atKidz1stFund.com or registering in the bone marrow registry can help save a life. With your help we can all say, “I FIGHT FANCONI.”
We wish you a blessed holiday season.
In Seminole Pride,
The Fisher Family – Jimbo, Candi, Trey & Ethan”
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
September 16, 2011
Clearwater, FL – AmeriLife Group, LLC owner, CEO and President Timothy North travelled to Tallahassee today to donate $25,000 to Kidz1stFund™, a research project established by Florida State University football coach Jimbo Fisher and his wife, Candi, raising money to find a cure for Fanconi anemia.
The Fishers’ son, Ethan, 6, is fighting Fanconi anemia, a genetic disorder that stunts the body’s production of bone marrow, and Ethan will need a bone marrow transplant.
“From the Seminoles’ football team volunteering to be tested (via cheek swabs) to see if they’re a potential match for Ethan, to businesses such as AmeriLife – which are in a position to contribute to this cause – people from around the country are rallying to support Ethan,” Mr. North said, before leaving for the capitol. “Children shouldn’t have to battle such diseases, and we’re hoping to advance research for a cure, a cure we hope will come sooner than later.”
Statistically, Fanconi anemia affects about 1 in 131,ooo people, and for every 38,000 people tested, perhaps one could be the ideal match as a bone marrow donor for Ethan. According to researchers, even if, for instance, one of the Seminole football players isn’t a match for Ethan, he may be able to help someone else with FA or the 70 other illnesses a bone marrow transplant can treat.
Kidz1stFund is a 501 (c) (3) non-profit charity, providing support to families, as well as education and awareness of the disease. Additional information about the fund and research into Fanconi anemia may be found at www.Kidz1stFund.com.
For additional information on AmeriLife or Timothy North’s contribution to Kidz1stFund, please contact Public Communications Director Wayne Shelor at 727-726-0726 or by e-mail email@example.com.