Co-Founder of Spondylitis Association of America,
The first President of the Board of Directors and the first Executive Director
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.
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 all 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.
For me, after 23 years at the helm of this organization, the time has come to retire. It’s always hard to say goodbye, but I am confident that I am leaving SAA in the capable hands of a wonderful volunteer board of directors and staff who together will never cease working to pursue our mission.
With all our progress, there is still a long road ahead, but SAA enjoys a time of opportunity and momentum. I will retire in June 2006, but I am not really saying goodbye to you. My dedication remains as strong as ever, and I know you will join me in continuing your support into the future. Together, we can end the tragedy of this disease forever.
Co-founder & Retired Executive Director
A Note from the creator of Faces of AS, Cookie Hopper
“It was important for me to do this, not for myself, but for each one of the Faces on this site and those who are still unknown. I wanted to show the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect.”
Creator of Faces of AS, SAA Member, and Face 0062