A message from Jane Bruckel, BSN, RN - Co-Founder of SAA, first President of the Board of Directors and the first Executive Director (retired) - from the March / April 2006
issue of Spondylitis Plus
Twenty-three years ago, 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