Enclosed I present a brief description of how the Run for ALD funds will be used. It is longer than what you may wish to use,. but I wanted to show why these funds are so extraordinarily significant at this moment.

These funds will be used immediately for the following specific purpose:

On February 24 we made an important serendipitous discovery. We found that the study of a certain lipid fraction
( :Lysophosphatidyl Choline, abbreviated ' Lyso-PC) which had not been studied in ALD before, showed a more striking difference between ALD and control than any other fraction tested before. Study of this fraction has made it possible to identify ALD patients in the tiny blood spots on filter paper that are obtained from every newborn baby in the US. We believe that this technique will make it possible to identify EVERY patient with ALD in the newborn period, long before there are symptoms, and this will have a profound effect on the therapy of ALD. We believe that with treatment at that time, we will be able to reduce greatly the incidence, and possibly prevent, the devastating form of ALD in boys shown in the movie Lorenzo's Oil

This new method of diagnosis has been accepted for publication in the Journal of Molecular Genetics and Metabolism and we have applied to the National Institutes of Health for major new funds to support this new direction of research. However, it will be at least 6 months, and possibly 12 months, before this will happen ( I do believe that it will). With the funds that the" Run for ALD" we can keep this work going until then. The funds will permit us to give partial support for the scientist who has developed this technique ( Dr Walter Hubbard in the Department of Clinical Pharmacology at Johns Hopkins) and will give us access to the $400 000 apparatus ( Liquid Chromatography Tandem Mass Spectromery) required to run the test. This is a new collaboration and Dr Hubbard has gone out of his way to help and he is included in the NIH proposal. The Run for ALD funds will permit us to keep this going until then and will speed this new development immensely. I am very excited about this. My wife Ann feel that. because of iits implications for treatment, that this is the most important advance that we have been associated with during our forty year research career.

Again, Please give our sincere thanks to all ALD runners and supporters.


Hugo Moser