My Story…
John was diagnosed with ALD in the fall of 1997. Within 60 days of diagnosis, John received his bone marrow from a non-relative donor outside of the United States. In the 27 years since John's passing Franci, Christy and I are very happy to see that many states are now testing newborns for the possible existence of this genetic disease. We also see advantages to new, innovative ALD treatments. First, the patient's own cells are employed. Thus, there is no need to find a matching bone marrow donor. Second is the safety factor (no introduction of a stranger's bone marrow into a child). Third, gene therapy is potentially a permanent lifetime cure because a boy's broken gene is replaced with a perfect replacement gene. We believe that raising funds for continued ALD research is a very worthy cause.
Donate to help Amy raise money for Run for ALD, Cure the Boys’s fundraising campaign.