President/Executive Director's Message - Virginia T. Ladd
As I write this, I have just returned from Slovenia where I attended the 7th International Congress on Autoimmunity. All of you AARDA friends would have been proud of the recognition received by our organization. A very special part of the Congress for me was receiving the "Lifetime Contribution Prize for Autoimmunity," not only for my own work but also for AARDA's role in the autoimmune picture.
A special issue of the Journal of Autoimmunity, entitled The Environment, Geoepidemiology and Autoimmune Diseases, guest edited by doctors Yehuda Shoenfeld, Pierre Youinou, and M. Eric Gershwin, was published "based on the goals of the 7th International Congress on Autoimmunity." I think that the following paragraphs taken from the "Introduction" will be of interest to AARDA members and friends:
This volume is dedicated to the founding principles and the good work of the American Autoimmune Related Diseases Association (AARDA). AARDA plays a fundamental role throughout the world in education, awareness, and research in developing new therapies, improved diagnoses, and support services for patients with AD. AARDA has in fact become an international healthcare organization.
The seed for AARDA was planted by Virginia T. Ladd, who is not only the founder, but also the current president. Virginia Ladd, herself a sufferer of AD, became involved with the Lupus Foundation of America and the Lupus Chapter in the State of Michigan. In her role within the Lupus Foundation, Virginia Ladd became involved addressing questions from patients and family that were desperate for information. Over time, she became ever more knowledgeable and became a resource for patients seeking information on a variety of AD. For Virginia, who sought no recognition for herself, there was a compulsion to help not only because of her own health, but also because of the presence of AD within her family.
In the late 1980s while President of the Lupus Foundation of America, Virginia Ladd became convinced of the need to focus research more in the broad area of AD but, more importantly, to develop the understanding that such research and its funding was dependent on patient education and public awareness. She was also aware that a huge segment of the healthcare field, represented by AD, did not appear to have an American National focus or clearinghouse for the large number of AD identified. Autoimmunity was little known to the public and almost no collaboration existed amongst national health agencies in the areas of research, public education and patient services. Even though Virginia Ladd is not a trained scientist, she recognized that such diseases share common pathways and likely similar genetic backgrounds. In discussions with many professionals in the field, she felt there was an urgency to develop advocates for basic research and public awareness.
Finally, a steering committee of community leaders was organized to initiate an American national agency for all AD. Supported by a dedicated cadre of people who shared her vision, Virginia Ladd oversaw the founding of the American Autoimmune Related Diseases Association in 1990, based in part on a skeleton staff and dedicated volunteers.
In December 1991, the American Autoimmune Related Diseases Association was incorporated and received its 501(c)(3) designation from the Internal Revenue Service. It was, in fact, the first national non-profit health agency that would serve the interest of the millions of Americans suffering from AD.
In 1992, AARDA formed its prestigious Scientific Advisory Board which was chaired by Dr. Noel Rose of the Johns Hopkins University who contributed significantly to the research of AARDA.
AARDA is now approaching its 20th anniversary and has remained the national leader not only in patient education, advocacy, and public information, but also in developing national workshops, discussion groups, symposia and direct funding of research. The progress report on a recent workshop was published in 2008. It is for this reason that this volume is dedicated to Virginia Ladd and AARDA, and the chairpersons of this symposia are proud and excited to recognize the achievements of AARDA and the mission they are fulfilling.
There! You can see the reason that I chose this article to replace my usual "President/Executive Director's Message." With humility and gratitude, on behalf of all of us in AARDA, I thank doctors Shoenfeld, Youinou, and Gershwin for their kind words and Elsevier, Ltd, UK, for publication.
In closing, I urge all of you in the Boston, St. Louis, Cleveland, and Warren (Greater Detroit) areas to gather friends and relatives to take advantage of the extremely helpful information that will be offered at the AARDA public meetings in these areas in the coming months. It is rare to have an opportunity to hear, in person, outstanding autoimmune disease experts and be able to ask on-the-spot questions of these speakers. Since we are scattering these meetings, "What Every American Needs to Know About Autoimmune Disease," in various parts of the country, it is not likely that such a meeting will appear in your area again for quite some time. Do you have questions? Attend an AARDA public forum! I'll see you there...
My best wishes to all of you,
Virginia
