The Spinal Cord Tumor Associatation, Inc. is a not-for-profit organization formed by spinal cord tumor survivors for the purpose of supporting survivors and their families. We also seek to educate and raise awareness about this rare and debilitating illness, and work in partnership with the medical community and others to improve survivors quality of life, as well as for the prevention and cure of spinal cord tumors.
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SCTA has evolved from the vision of Robert Green, a commercial aircraft technician from the Chicago area, who was told in January 1999 that he had a tumor in his spinal cord extending from his neck to his middle back area.
Robert’s understandable initial feelings of alarm and dismay were deepened by frustration when his research on this frightening disease turned up little of practical use or understanding by a layman. Robert succeeded in securing successful surgical treatment, but felt compelled to share his good fortune with others. His interest and talent in Internet technology led him to seek out other spinal cord tumor survivors by invitation on neurological bulletin boards, resulting in a surprising volume of responses. What followed was a sharing of strikingly common experiences by a group of individuals of diverse backgrounds, who had a common need and desire for information, guidance and emotive support. In the course of compiling the responses, Robert became acquainted with Linda Stophel, a long-term survivor of a tumor similar to his from Northwest Florida, and an individual of great positive energy and compassion. Together, they expanded “Spinal Cord Tumor Support”, a website launched in March 2000 by Robert, into a “virtual meeting place” for those whose lives have been impacted by “SCT”.
The site flourished in the two subsequent years, comprising a Discussion Board, Medical Library, Personal Histories of Survivors with a special section devoted to Children and a rich compilation of information gleaned from the experiences of a group in excess of four hundred individuals.
A first conference of 50 members was held in Orlando, FL in the summer of 2002. This gathering gave rise to the pursuit of not-for-profit status for the still loosely defined organization. Robert’s and Linda’s persistence led to the convening of a focused small group of regular website participants at Conyers, GA in May 2003, which formed a Board of Directors and facilitated the incorporation of the Spinal Cord Tumor Association, Inc. as a 501(c)(03) not-for-profit entity. Conferences are now scheduled to take place every two years. The 2004 event in Las Vegas, which attracted a distinguished speaker panel of neuromedical and related practitioners, was an unqualified success.
SCTA has since been moving forward to consolidate fundraising activities and building awareness of the nature and effects of spinal cord tumors on human lives. The Board of Directors is supported by an Advisory Board, which offers medical and corporate expertise.