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.)
I look back – and I can’t believe it was years 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 symposia for patients and doctors. Later, we issued audio and video exercise tapes.
We also organized patient support groups throughout the country. I look back as well to so many heart-warming letters you have written. In one, a man who turned his life around said, “I want to thank SAA for being a significant contributor to me and my family’s success.” In another, a woman who had not met me generously credits me for improving the lives of thousands through SAA’s patient support groups. I remember my great pleasure in meeting many of you across the country. In my files, I also find reports of projects, from inception to completion, which recall the many dedicated people who have worked with me over the years. And I take great pride in the solid accomplishments that SAA has achieved to make life better for all of us.
While the wording of our mission has been tweaked over the years, it basically remains the same today as it was from the start. We recruited clinicians and researchers to help achieve our goals, which were to disseminate information, accelerate research (which had languished in the US) and provide support for all those who need it. When starting from nothing –a blank slate — those are huge goals. SAA’s support group program is the embodiment of that mission.
Our vision of the future has never wavered – A world free from the pain and disability of AS and related diseases. While I retired from my full-time role at SAA in 2006, my dedication to this shared cause remains as strong as ever, and I look forward to seeing the wonderful achievements yet to come.
– JANE BRUCKEL
Co-founder & Retired Executive Director
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