A personal situation inspires a powerful fight.
Since it’s inception in 2011, Kidz1stFund has worked to raise awareness and funds toward research into this rare disease, as well as, encouraged people to join the National Bone Marrow Registry. The National Bone Marrow Registry matches donors to patients that are impacted by any of over 72 diseases.
Thanks to the generous research funding of our donors and sponsors we are:
- 5,000+ individuals have joined the National Bone Marrow Registry at Kidz1stFund-sponsored drives.
- $8.5 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.
- Conducting gene editing research aimed at correcting the defective FA gene in patients who have the disease and eliminating the need for conventional bone marrow transplant - and the risks that it carries.
- Developing exciting strategies for improving outcomes for FA patients and others after transplantation.
- Examining the causes of head and neck cancer in FA patients, ultimately improving prevention and treatment options.
- Manipulating the patient's immune system and the donor's cells to minimize the risk of infection while at the same time allowing newly transplanted cells to grow.
As Ethan prepares to celebrate his 14th 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.