When diagnosed with invasive Bladder Cancer at 47 I was terrified,I had a disease that I knew so little about that I had to look up the symptoms. I felt totally alone and did not know what direction to go in.
As time went on I also became fascinated with the potential of on-line social networking and what it could offer to the Bladder Cancer survivor’s community. I envisioned another organization with its first priority being survivor and caregiver support, harvesting and giving access to good information while becoming another voice to advocate for Bladder Cancer. In late summer of 2007,
I left BCAN knowing it was fulfilling its mission and had talented people giving it a firm foundation. I shared my vision with other Bladder Cancer advocates and the American Bladder Cancer Society was born.The last four years I have seen incredible change in my life. Today finds me with no evidence of disease living a full life following Radical Cystectomy.
My husband Edward and I live in the beautiful Berkshire Mountains of western Massachusetts with our two dogs Sam and Amelia. Our sons Eric and Kenneth are men now and have flown the nest to start their own. I have retired from my career as a Realtor to devote my time to the American Bladder Cancer Society. And a disease that I didn’t even know the symptoms of four years ago has become the focus of my life’s work.
Ed holds a Bachelors of Science degree in Electrical Engineering from Rensselaer Polytechnic Institute (RPI) graduating in 1978. He has been employed in the U.S. defense industry as an engineer for almost 30 years. His career began in his hometown of Pittsfield, Massachusetts. While working on the Strategic Defense Initiative (SDI) at the U.S. Army’s Redstone Arsenal in Huntsville, AL, he met and married Cynthia in 1992.
The only thing she could find was an eight hundred number for the National Cancer Institute. She called and asked for information. They sent her a large brown envelope of what was available at the time. What she read was frightening because the odds for survival, or any quality of life in that information were very small. She turned her search to the internet and found a research paper about an Indiana pouch.
When diagnosed with bladder cancer in the late winter of 2008, Sara Anne thought “Now I know what I am going to die of.”
She began doing research on the internet, found the American Bladder Cancer Society web site, and decided that dying was not an option! The information, support, and friendships that she found there convinced her to offer her efforts to others in the same situation.
She has been very active on the Forum, offering advice and support to others, eventually became a Forum monitor, and has worked on testing and reviewing content for the new Web Site. Sara Anne’s interest in medicine and medical research goes back several decades. After obtaining a PhD in physical chemistry, she changed her research direction with a post-doctoral fellowship in neurochemistry/neuropharmacology.
She became a faculty member in the Psychiatry Department of the University of Iowa College of Medicine where she did research in developmental neurochemistry and participated in teaching neuropharmacology/neurochemistry to medical students and psychiatric residents.
During this time, she received research grants from the National Institutes of Health as well as a Research Career Development Award. After a sabbatical at the Roche Institute of Molecular Biology, Sara Anne moved to the extramural programs, National Institutes of Health in Bethesda, MD, where she eventually became Director of the Pharmacological Sciences research grants program in the National Institute of General Medical Sciences.
Sara Anne is not only surviving bladder cancer, but is also a breast cancer survivor. She lost her husband in 1999 to lung cancer. She has made fighting cancer in its many forms a prime goal.
Mike is a senior executive with over thirty years of experience in international business and is currently a management business consultant with a leading consulting firm. He first bout with bladder cancer was in 2006 when he was diagnosed with CIS (carcinoma in situ) of the bladder.
He found the predecessor of ABLCS forum where he was able to connect with others who had had bladder cancer and their loved ones. Mike became an advocate for his own care and interacted with other users once the ABLCS Forum was established. Learning and contributing knowledge were his goals. After two years of being cancer free Mike’s bladder cancer came back. This time it was muscle invasive.
So, back to the ABLCS Forum he went. Again, interacting and learning and contributing with others to better understand his options and the best path forward. Mike had a radical cystectomy with neobladder replacement in 2008 and continues to be cancer free.
However, Mike didn’t forget the help and support he got from the members of the American Bladder Cancer Society. He came back to the Forum day after day to try to give to others the kind of support and fact based information that he received. In 2012, Mike became a Director on our Board of Directors.