Geoff's BMT Fund

Geoff has a rare genetic disease called Adrenomyeloneuropathy (AMN), which is the adult onset of Adrenoleukodystropy (ALD). AMN is a neuro-degenerative disease for which there is no cure. Once there is cerebral involvement, the only available treatment is an allogeneic haematopoietic stem cell transplant, which is essentially a bone marrow transplant from a matched donor.

Fortunately, Geoff’s younger sister, Jennifer, has been determined to be a match and the transplant is tentatively scheduled for early February. As with bone marrow transplants associated with cancer treatments, Geoff will need to be admitted to the hospital prior to the transplant to receive chemotherapy and radiation to wipe out his immune system. We are lucky to live in Maryland, which has both the Kennedy Krieger Institute and Johns Hopkins Hospital, which are one of the very few (potentially, the only) place that could undertake this.

The entire transplant process with take place at Johns Hopkins Hospital in Baltimore and Geoff will be hospitalized for several weeks, but required to live near the hospital for month(s) following the transplant for follow-up testing, treatments, etc. We are planning to stay at one of the extended stay hotels near the hospital, though we have not yet made specific plans.

We greatly appreciate all the support and offers of help that we’ve received.

If you would like to learn more about Adrenomyloneuropathy, here are some helpful sites:

Kennedy Krieger Institute
The Myelin Project
United Leukodystrophy Foundation