From THE AMERICAN SOCIETY FOR MATRIX BIOLOGY
WINTER 2009, VOLUME 8, NO. 3

Coalition of Heritable Disorders
of Connective Tissue (CHDCT)

Contributed by Priscilla Ciccariello (CHDCT, Co-President)

The last several decades of medical progress have been marked by an increasingly close collaboration among researchers in different organizations that share a similar investigative focus. Less widely-recognized-though no less vital-have been the burgeoning relationships between these professional medical groups and the community of patients and their families that the research is apt to affect.

I feel fortunate to have been born at a moment in medical history when my family and I were able to participate in and benefit from these developments. After becoming aware that several of my children were affected by the Marfan syndrome, I became active in the National Marfan Foundation and later also participated in the two related organizations referred to here. In 2002, in my role as President of the Coalition of Heritable Disorders of Connective Tissue (CHDCT), I attended the first national conference of the American Society for Matrix Biology in Houston, Texas.

As CHDCT President at the time, I was elected to what I liked to refer to then as a "layman's position" on the ASMB Board. The founders of the ASMB generously provided this representation as a way of acknowledging the partnership between patient and research, a concept whose importance had begun to be recognized about thirty years earlier. We can be confident that this outreach from both patients and researchers has enriched the prospect of NIH support, for even
now, despite the vulnerability of Congressional support due to the current problematic financial outlook, there is an increased emphasis at the NIH on translational research-the transmission of medical findings from "the bench to the patient."

Founded in 1989, the CHDCT began testifying in Washington, D.C in 1994, offering oral and written testimony both in Congress and at the NIH, and emphasizing the need to build awareness of heritable disorders of connective tissue on a national level. Their goal was to press for research, visibility and increased understanding of these rare and complex disorders. The patients themselves testified, offering ethical and
moral justification for basic research.

The awareness of this body of disorders was formally initiated
in 1956, when Dr. Victor McKusick of Johns Hopkins
Medical Center launched his first slim edition of Heritable
Disorders of Connective Tissue, which was to see a number
of revised editions through the years. Since then, there has
been increased impetus for a basic understanding of connective
tissue in general and heritable connective tissue disorders specifically.

The CHDCT grew in response to the need for research providing the strength of numbers. It includes groups that have their own membership-supported volunteer organizations, representing some twelve different disorders, which affect many millions of people. The Coalition, founded at the height of the growth of disease-specific voluntary health organizations, serves to strengthen the impact of these organizations
through dissemination of information, conferences, and congressional testimony.

Running a parallel course with the ASMB-although, in this
case, serving primarily to highlight the important research
accomplishments in this field-the CHDCT has made its own
mark. Among its most important accomplishments since its
founding in 1988 are these: five NIH supported research
symposia; support for other related conferences and symposia;
CHDCT congressional testimony in support of connective
tissue research since 1994; partnership with the ASMB since
its founding; and in 2002, creation of a web site,
http://www.chdct.org, which averages some 4,000 hits
yearly. Recently, the CHDCT collaborated with the NIAMS on
the revision and distribution of the brochure, Heritable Disorders
of Connective Tissue (NIAMS, 2007).

The CHDCT's 2010 testimony is in the works, and the prospect
of a future conference or symposium on heritable disorders
of connective tissue is under consideration. We welcome
the thoughts and input of the ASMB membership regarding
these areas of interest. The CHDCT looks forward to continuing
its long-standing partnership with the ASMB, and stands ready in support of the research and researchers that
it represents.

For more information go to
http://www.niams.nih.gov/Health_Info/Connective_Tissue
/default.asp

Sharon Terry, MA, Co-President,
Coalition For Heritable Disorders Of Connective Tissue
4301 Connecticut Avenue, NW, Suite 404, Washington DC 20008
Voice: 202-362-9599
Fax: 202-966-8553
E-mail: chdct@pxe.org

Priscilla Ciccariello, Co-President
cilla71@aol.com

Website: http://www.chdct.org

Copyright 2010 © Coalition For Heritable Disorders Of Connective Tissue Revised March 2010