World-class U of M Fanconi anemia researchers backed by new national campaign

August 5, 2011

MINNEAPOLIS / ST. PAUL  University of Minnesota Medical School researchers working towards a cure for Fanconi anemia, a very rare life-threatening disorder, will be further fueled by a new fund created by Florida State University football head coach Jimbo Fisher and his wife, Candi. The Fishers’ 6-year-old son, Ethan, has Fanconi anemia, a rare, inherited blood disorder that leads to bone marrow failure.

Money raised through a new campaign called OnaKwest for a Cure will support research into Fanconi anemia at the University of Minnesota, a leader in discovering 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.

“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.”

University of Minnesota Amplatz Children’s Hospital pediatric blood and marrow transplant physician Margaret MacMillan, M.D., a leader in Fanconi anemia research, 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 MacMillan, a University of Minnesota Physician.

“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.”

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 Be The Match 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.”

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 Fishers plan to raise additional money for the Kidz 1st Fund 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.

Source: University of Minnesota