Tilson Editorial
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Cardiovascular Surgery, Vol, 9 No.4, pp 311-312, 2001 © 2001 The International Society for Cardiovascular Surgery. Published by Elsevier Science Ltd All rights reserved. Printed in Great Britain PII: S0967-2109(01)00014-X 0967-2109/01 $20.00 |
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| www.elsevier.com/locate/cardiosur | ||
EDITORIAL
Public awareness of aortic aneurysm
Although a successful surgical approach for the abdominal aortic aneurysm (AAA) was introduced by Dubost almost 50 years ago, it was not until the early 1980's that investigators took an interest in the unique features of aneurysmal disease that differentiates its pathophysiology from atherosclerotic occlusive disease. Public, and also physician, awareness of the importance of genetic susceptibility in AAA was virtually non-existent. Two recent announcements define a measure of the progress that has occurred over the last 20 years.
First, in 1998, the National Heart, Lung, and Blood Institute of the National Institute of Health (NIH) announced a Request for Proposals (RFP) for basic research on the etiology and genetics of AAA. Although aortic aneurysms rank approximately 15th as a leading cause of death, a study of the financial support for the study of diseases in relation to their burden on public health had shown that AAA was not among the top 25 in terms of funding. An announcement by the NIH of an RFP specifically for AAA was unprecedented and a cause for satisfaction among the community of AAA researchers. Currently, six academic vascular surgery centers receive NIH funding to pursue study of the pathogenesis of aortic aneurysms.
Second, the founding of a tax-exempt, charitable organization to raise public and physician awareness of the problem of AAA and other aneurysms was similarly overdue. Such an organization, Aneurysm Outreach Inc. (AOI), was incorporated in September 1999 and was granted IRS tax-exempt status in April 2000. It has come about because of the effort and perseverance of its Founder and President, Ms Sheila G. Arrington, of Prairieville, Louisiana. She was energized to undertake this challenge by the personal experience of dealing with the premature death of her 58-year-old father, who died with a ruptured AAA.
In 1994, the Wall Street Journal ran an article that quoted Charles D. Boyd, Ph.D. (then at Rutgers University in New Brunswick), as suspecting that AAA was an inherited disorder. When Ms Arrington became aware of this possibility, she called Dr. Boyd for additional information. He suggested that she gather a family medical history to see if the Arringtons might make a contribution to his research plans. She learned that five of eight siblings, including her father, plus her grandfather and additional cousins had been affected by AAA or iliac aneurysms. Shocked by the impact that aneurysms have had on her own family, she resolved to make AOI an effective organization, dedicated to mobilizing people and resources to eradicate aneurysms, as stated in the mission statement. More specifically, among the initial goals are: (1) To raise public awareness that aneurysms can be an inherited disorder; (2) to stimulate and support research on AAA genetics and etiology; and (3) to establish a support network for those at risk and their families.
Among other accomplishments, AOI has established a web site, www.aneurysm-help.org. Plans for the site include answers to frequently asked questions (FAQ), a patient/family/guest registry, a research support questionnaire, and a bulletin board. The web site is planned to provide a place for dialogue among those with a common interest, to gather statistics for use in research, and to create a strong and unified advocacy group to accomplish AOI's mission statement of eradicating aneurysms. Also, there will be a page to acknowledge with appreciation financial contributions from both patients and physicians, and grants from other charitable foundations.
The author has been offering encouragement and advice since October 1999. Among other goals to be achieved in due course is to move AAA from sub-classification under peripheral vascular disease as a cause of death to a stand-alone category. The initial focus for AOI will be aortic aneurysms, but AOI plans to branch out into other aneurysm areas in the future. Aortic aneurysm is a silent killer and we need to raise public awareness of this deadly disease.
M. David Tilson
New York, USA
Tel. +1-212-523-7779; Fax: +1-212-523-6495;
e-mail; mdt1@columbia.edu
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