This month, the nonprofit organization Kidz1stFund celebrates its first anniversary as it looks back on a year marked by impressive fundraising, increased public awareness and legislative goals reached in the fight against the genetic disease Fanconi anemia (FA).
Florida State University’s head football coach, Jimbo Fisher, and his wife, Candi Fisher, created Kidz1stFund after their younger son, Ethan, was diagnosed with the rare blood disorder in 2011. FA causes possible birth defects and bone marrow failure, and can lead sufferers to develop cancer years earlier than people in the general population.
In the first year of Kidz1stFund’s existence, more than $500,000 was raised and donated to the University of Minnesota’s Amplatz Children’s Hospital, doubling that university’s current research budget for Fanconi anemia. The University of Minnesota was chosen because it treats more FA patients who need blood and marrow transplantation than all other hospitals in the country combined.
“The funds raised by Kidz1stdirectly and immediately advance critical research for FA children,” said Dr. Margaret L. MacMillan, 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 more than 2,200 followers on Twitter, Kidz1stFund has been able to spread the word about ways people can contribute to the cause both financially and through bone marrow donation.
Through the efforts of the Fisher family, Kidz1stFund has added 1,710 new registrants 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,” said Candi Fisher. “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. 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.”
Kidz1stFund has not been in this fight to raise awareness alone; media outlets and others have joined in all year long to spread the word. Organizations including The Huffington Post, the Atlantic Coast Conference and ESPN have helped, along with numerous statewide newspapers, blogs and magazines. A multitude of individuals, businesses, universities, clubs and celebrities have joined in. One Tallahassee high school student event created a free public-service announcement for Kidz1stFund that has now been distributed throughout the United States for use on radio and TV.
However, the organization’s mission doesn’t stop here. In February, the Florida House and Senate passed a resolution recognizing Kidz1stFund’s efforts. And this past July, the Fishers went to Washington, D.C., to meet with various members of Congress and officials from the Federal Drug Administration and the National Institutes of Health to start discussions about allowing phase I clinical trials on children with life-threatening diseases and to bring to their attention the challenges faced by doctors when treating children with rare diseases.
One of Florida’s members of Congress, U.S. Rep. C.W. Bill Young, has been known for his support of the National Bone Marrow Program and was one of the members of the House of Representatives to commit to support the Fishers’ 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,” Young said.
As for Ethan Fisher, 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 and 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.
To learn more, visit www.kidz1stfund.com or call Herbie Thiele of Ron Sachs Communications at (850) 222-1996.