From Florida State University their own selves...
Florida State University football head coach Jimbo Fisher and his wife, Candi, today announced the creation of a new national fund to fuel the quest for a cure for Fanconi anemia, a very rare life-threatening disorder that afflicts their 6-year-old son, Ethan, and many others.
“One thing I’ve learned as a football coach is to never accept defeat,” Coach 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.”
Money raised through a new campaign called OnaKwest for a Cure will support research into Fanconi anemia at the University of Minnesota, one of the leading universities pioneering better ways to treat the disorder, in advance of finding a cure. The campaign will raise research dollars for the Kidz 1st Fund, just established by the Fishers, through the sale of t-shirts, wristbands and other products and through online donations. Coach Fisher said he will donate all fees associated with his public speaking engagements to the fund.
This type of hereditary anemia, primarily a blood disease, can affect all systems in the body and leads to bone marrow failure. For decades, the disorder was thought to be untreatable, but promising advances in medical research have improved the prognosis. To extend their lives, most children suffering from Fanconi anemia will require a stem cell transplant, either bone marrow or cord blood, yet many wait years to find a donor who is a perfect match – or never find one.
For that reason, the Fishers also are making a widespread appeal for people to join the National Marrow Donor Registry to determine if they are a match for any of the thousands of people whose lives depend on a bone marrow transplant.
“The news that Ethan has this disease is 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,” Candi Fisher said. “We ask for your prayers, your participation in the bone marrow donor registry and your contribution to speed up the race for a cure.”
Leading Fanconi anemia researcher Margaret MacMillan, M.D., a pediatric blood and marrow transplant physician at the University of Minnesota Amplatz Children’s Hospital, said the fundraising efforts planned by the Fishers could be “a game changer” in the fight against Fanconi anemia.
“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,” said Dr. MacMillan. “It is with research that we have changed what’s possible for children just like Ethan. But there is much more to do. We will not stop until we have 100 percent survival. To this end, we are investigating safer treatments --even treatments that may eliminate the need for transplant in the future. Our team has already changed the practice of medicine for Fanconi anemia and other diseases, and we aim to do it again. With philanthropic support, we can give patients like Ethan and his family hope for a healthy and happy future.”
FSU Athletics Director Randy Spetman said the Fishers have the prayers of the FSU community. “They have the support of the entire Seminole family, and we all are teammates for Ethan as he courageously battles this disease,” Spetman said.
The Kidz 1st Fund, fighting Fanconi anemia, is affiliated with the Alma Foundation, a 501 (c) (3) non-profit charity that primarily supports children and family causes, distributing more than $5 million to date.
The OnaKwest for a Cure campaign is dedicated to raising awareness about Fanconi anemia and helping to fund research for finding a cure. The Fishers have established the Kidz 1st Fund so that dollars raised through generous donations, online contributions and during special events will go toward finding a cure. To learn more about the fund and donate to the cause, please visit www.kidz1stfund.com.
Here's the first part of the presser from the FSU campus...