A personal situation inspires a powerful fight.
Jimbo Fisher and Candi Fisher have worked closely with several children's charities in the past, but when they were told that their son Ethan had a rare blood disease called Fanconi anemia, their lives immediately changed. They wanted to know everything they could about the disease, but soon found that there wasn't much information available. That's when they knew they had to do something that would not only help their son, but also help the many others affected by Fanconi anemia.
For the past five years, Kidz1stFund has encouraged people to join the National Bone Marrow Registry at BeTheMatch.org, and has continued to raise awareness and funds toward research into this rare disease. To date, Kidz1stFund has accomplished the following:
- 5,000+ individuals have joined the National Bone Marrow Registry at Kidz1stFund-sponsored drives.
- $4.5 million dollars have been donated to the University of Minnesota Masonic Children’s Hospital (https://www.mhealth.org/childrens/), the nation’s leading FA research institution.
- A new study has been commissioned and is now open to study the medical and psychosocial issues in Fanconi anemia patients in order to optimize their care. We are excited that Ethan is the first patient enrolled in the study.
- The CliniMACS Prodigy machine purchased for the University of Minnesota using Kidz1stFund donations has allowed a leap forward in automated cell processing that helps discover whether it’s possible and safe to treat and prevent life-threatening viral infections in FA patients undergoing transplantation.
- Most importantly, the life expectancy of children with FA continues to rise, with an average survival rate of 33 years and climbing.
As Ethan prepares to celebrate his 12th birthday (May), it’s important to remember that there are thousands of children just like him who may not be in the spotlight, but who are dealing with this terrible disease just the same. It’s for them that we began this fight, and it’s because of them that we vow to see it through to the end.