A.S. Face 1983: Jane Bruckel
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.
JANE BRUCKEL
Co-founder & Retired Executive Director
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.
JANE BRUCKEL
Co-founder & Retired Executive Director
Dear Jane Bruckel,
ReplyDeleteI have waited many years to add you to the Faces of AS website, and to be honest I never thought I would see the day I would post Faces of AS 1983: Jane Bruckel. It’s obvious why I chose this number for you, since this is the year it all began. The reason I chose today is because it’s a very important date in my life, and for me it was the perfect day to share your story.
The true irony for me is that the one thing that would be instrumental in helping me find the courage to do something with my life with Ankylosing Spondylitis was created the same year that I had put in motion the plan to end my life.
As you all were beginning your journey to create an organization that would change lives forever, I was working on what needed to be done and said before I made the decision to give up.
I wish I could say I ended up being strong enough to make the better choice, but I didn’t.
I came across the SAA around the year 2006 and my life has been richer for it. The information I have learned to help me not only live a better life of quality but has given me the encouragement to FIGHT for a better quality of life.
The family and friends I have made since joining the SAA are sometimes the only ones in the world to help me through the hardship of fighting this disease.
But most of all had it not been for your courage, dedication and hard work. I would have never known who I really was. I would have always just been Cookie who suffers with Ankylosing Spondylitis.
I would never have found the courage to really LIVE with this disease, or FIGHT for this disease or to be able to THRIVE in spite of this disease.
Simply put I would have never known who I was meant to be because of this disease if not for you and the Ankylosing Spondylitis Association AKA Spondylitis Association of America.
I will be forever grateful for you and your vision.
And to think it all began with a woman considering it was believed to be a man’s disease.
With the utmost respect and heartfelt gratitude
I thank you very much for sharing your story with us.
Sincerely Cookie