Tallahassee, FL - August 7, 2012 -
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.