|
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
Tel. +1-212-523-7779;
Fax: +1-212-523-6495; e-mail;
mdt1@columbia.edu
|
|
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
|