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 modest: to overcome our sense of isolation, to find out what worked best and what didn’t work, to cope with frustrating challenges, and to celebrate our shared successes as we learned how to live with this disease.
We had no thoughts then of White House visits or glittering international conferences, no plans for exciting multi-million 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.)
I look back – and it seems not that long ago – to our first meeting – the very first meeting of AS patients in this country. We found camaraderie in the shared experiences of misdiagnoses and lack of information. Our anger quickly turned into action, and my home became the grand central station of volunteer activity. As we sat around my dining room table, we charted the course for accomplishing a series of “firsts” in this country. We planned and published the first comprehensive book on AS written for patients, along with, eventually, hundreds of pieces of other literature. We held the first of what would become annual educational symposiums for patients and doctors. Later, we issued audio and video exercise tapes. We organized patient support groups throughout the country. We gathered publicity and celebrities to our cause.