In 1983, when I co-founded this organization, there was no information available about AS – not a single pamphlet and, incredibly, only very few doctors who were interested in the disease. So our goals in those days were lofty: to completely change the landscape of AS in this country.
We had no thoughts then of White House visits or glittering international conferences, no plans for exciting multimillion-dollar research programs and a unique partnership with the National Institutes of Health, no dreams of ground-breaking genetic studies to solve the mystery which, it turned out, had plagued mankind since the days of the Pharaohs. (We also had no one to tell us we were charting a near-impossible course.)