Endometriosis Association teams with prestigious Vanderbilt University School of Medicine TO CREATE DEDICATED RESEARCH FACILITY!

Hope is that dedicated, concerted effort will unlock secrets to endo cause and cure
            by Mary Lou Ballweg, Endometriosis Association President

Vanderbilt University School of Medicine, one of the nation’s top medical schools and research centers, has asked the Association to join them in establishing an Endometriosis Association research facility at their Nashville, Tennessee campus!   Of course we said: YES!!!

Vanderbilt offered us:

1. a research facility dedicated to addressing the mechanisms responsible for causing endo;
   
2. research laboratory space of 5,000 - 6,000 square feet;
   
3. the full support and assistance of the institution, access to critical research equipment, and the prestige and reputation of the Vanderbilt name;
   
4. an up-front investment of $2 million in the facilities and programs.

While this may all sound like the stuff of fairy tales, it’s true!

In return, Vanderbilt has asked the EA for funding assistance to help staff the facility, our involvement and input in setting research directions, and the use of the Endometriosis Association name attached to the facility.

Raising the funds is a tall order, but with the support of members and friends, the Association is up to the task. This is the chance of a lifetime, an unprecedented opportunity to advance research on endometriosis!

Never before has a major medical institution made such a bold commitment to solving the medical and scientific mysteries of endometriosis. Vanderbilt’s partnership with a nonprofit such as the Association is also unique, and an immense tribute to our members’ commitment to research.

Even before Vanderbilt approached us about this partnership, we were impressed with the excellent endometriosis research of Vanderbilt’s Kevin Osteen, Ph.D. After visiting the university and meeting more of the researchers, we were further excited about the outstanding research facilities, eager group of scientists and physicians, room for growth and, most importantly, Vanderbilt’s commitment to research leadership.

It has been pure joy working with Vanderbilt as we establish the vision for the Endometriosis Association Research Program at Vanderbilt.   Dr. Osteen and his colleagues, working through the Association, are actively seeking the involvement, creativity, and motivation of those most affected by the disease—women with endometriosis and their families.   The Association’s constant feedback and synthesis of information from women with endometriosis is one of a number of ways to directly involve patients in the research process.   Listening to patients, the EA has been instrumental in countering many of the myths associated with endometriosis and setting research on a more productive path.

A team approach

Much endometriosis research in the past has been piecemeal, due to both sporadic funding and the multi-dimensional nature of the disease itself.   By creating a dedicated, multi-disciplinary team of researchers who can focus on solving the mysteries of the disease rather than the endless grant-chasing and administrative duties required of so many researchers today, this team will have the synergy and resources to truly find answers.   This approach has worked very well at Dartmouth Medical School, which houses the Tracy H. Dickinson Research Chair of the Endometriosis Association and related research.   At Vanderbilt, we hope to expand this concept into a full-fledged team approach.

A big picture approach

We also hope that the research team can explore the disease from a big picture point of view as our work has shown that endometriosis is not simply a matter of misplaced endometrial tissue.   In the new picture of the disease that is emerging, one sees not only the traditional symptoms of endometriosis—chronic pelvic pain, pain with sex, gastrointestinal and bladder problems, infertility, and others—but also high rates of atopic (allergic) diseases in the individuals and their families including allergies, food intolerances, asthma, eczema, and sometimes debilitating sensitivities to environmental chemicals such as perfumes, cigarette smoke, cleaning agents, and others; a tendency to infections and mononucleosis; problems with Candida albicans; mitral valve prolapse; fibromyalgia and chronic fatigue immune dysfunction syndrome.   Moreover, studies suggest that women with endometriosis may be at greater risk for autoimmune disorders including lupus, Hashimoto’s thyroiditis, and certain cancers.   It is our hope that the Endometriosis Association Research Program at Vanderbilt will help to re-define endometriosis.   In particular, we would like to understand the factors that participate in the initiation and progression of endometriosis, leading to effective prevention and treatment of disease.

Dr. Osteen and his colleagues have already developed a “big picture” view of endometriosis, an approach that says, let’s look at this disease as a whole, rather than just trying to find one little piece of scientific “truth” at a time.  Let’s take a systematic, dedicated, team approach to it.  Let’s go about this in a way that can really find the answers!  As the EA board phrased it: “Don’t stop until we get a cure!”

 An international approach

In addition to the permanent, multi-disciplinary research group at Vanderbilt, the team will include several promising researchers from other countries working at the facility for three years each under the “New Investigator Awards.” These awards will help advance research worldwide, provide cross-cultural input into the research process, develop potential lead investigators for endometriosis research groups around the world, and train new researchers in our field.

This partnership with Vanderbilt University School of Medicine is an unparalleled opportunity to further endometriosis research as never before, bringing the best work of the international scientific community to bear on the disease. Working together, we can make this vision a reality.

 Major research capital campaign

The Endometriosis Association is undertaking a major research capital campaign to raise $2.6 million for our Millennium Campaign for the Cure, approaching individuals, foundations, corporations and others for support. The Millennium Campaign will support Vanderbilt, ongoing research at Dartmouth, independent research worldwide, and the Association's support and education programs.

Please make a special donation or pledge today! And if you have contacts at any corporations or foundations that might consider making a lead gift, contact Mary Lou Ballweg at EA headquarters. Be part of the excitement!

Our strong belief is that the Endometriosis Association Research Program at Vanderbilt, along with our Tracy H. Dickinson Research Chair and program at Dartmouth, can find the answers we all need. What an exciting, hopeful time for all of us!

Why Vanderbilt chose the Endometriosis Association

Vanderbilt University School of Medicine, one of the foremost medical schools and research centers in the United States, chose to partner with the Endometriosis Association in its research efforts. What was it about us that so impressed this exemplary institution?

• Our research registry on endometriosis was the first—and largest—in the world. Our second data registry is now being established.
• Studies pointing the way to important immunological  understanding of the disease.
• Major breakthrough research showing that dioxin and other toxic chemicals can cause the development of endometriosis, and possibly cancer and other health problems to which those with endometriosis are susceptible.
• Our successful effort to convince Congress to allocate $5 million to endometriosis research in 1990-91.
• Our funding of a number of investigators and research sites.
• The establishment of the Tracy H. Dickinson Research Chair of the Endometriosis Association at Dartmouth Medical School, which has further expanded our noted work on dioxin and immune aspects of endometriosis.
• The NIH Endometriosis 2000 Conference in 1995, bringing endocrinologists and toxicologists together to better understand the new dioxin findings. This conference was initiated in response to the Association’s testimony about our dioxin research at a Senate hearing.
• The proven commitment of our members and donors to fund research.

Millions of women and girls all over the world suffer from endometriosis, a chronic immune and endocrine disease which causes years of pain, infertility, sporadic and sometimes complete disability, and can keep a woman or girl from reaching her potential and contributing fully to her family and society.   Endometriosis is a modern epidemic and appears to be growing rapidly.   Because of breakthrough research by the Endometriosis Association, the work of dedicated women and their families, and selected doctors and researchers around the world, understanding of the causes of the disease is now in sight.   But to reach that important goal and to hopefully save countless future generations from this scourge and all its ramifications for society, a major research effort is needed at this time.   The Endometriosis Association is committed to push that research frontier forward.

We believe that those affected by endometriosis and interested in it worldwide will support the effort to cure and prevent endometriosis. (To donate to the Campaign online, go to the Donation page, and check the appropriate donation designation box.)

 Vanderbilt University School of Medicine and the Endometriosis Association: two exceptional organizations dedicated to a common goal—eradicating endometriosis.   

Environmental Health Watch

Today there are 5 million girls and women in the United States who have endometriosis, along with another half million in Canada and millions more worldwide.  For those with endo, life is often a nightmare of misinformation, myths, taboos, improper diagnoses, and problematic hit and miss treatments. It is debilitating and incurable, often beginning as young as 10 or 11, and knows no racial or socioeconomic barriers.  Current research findings indicate that endometriosis is really just the tip of a much larger iceberg, one that encompasses a range of health problems sharing one key commonality: hormonal/ immune dysfunction.

The results of a 1998 Endometriosis Association survey, presented at the 6th World Congress on Endometriosis, provide startling data about the disease.  The percentage of women with endometriosis reporting symptoms before the age of 15 has jumped from 15 percent during the early to mid-1980s to 38 percent in 1998.  Early onset of the disease is highly correlated with increased severity.  This disturbing trend provides a grim future for girls and young women as more will experience severe life disruption because of endo related disability.

There is mounting evidence that links endometriosis to dioxin (a group of toxic chemicals containing known and probable carcinogens), PCBs and other endocrine disruptors (chemicals which act like hormones in our bodies and disrupt the immune system).  A 1992 study funded by the Endometriosis Association analyzed rhesus monkeys exposed for four years to TCDD (the most toxic form of dioxin). Two important conclusions of the study revealed that, "the incidence of endometriosis was directly correlated with dioxin exposure and the severity of the disease was dependent upon the dose administered," and that, "chronic exposure to the chemical toxin dioxin is directly correlated with an increased incidence in the development of endometriosis in rhesus monkeys."  This landmark study has been followed by other research which supports these findings, including recent studies which reveal that women with endometriosis and their families have a greater risk of developing breast cancer, ovarian cancer, non-Hodgkin's lymphoma, and melanoma.

In addition to these findings, the Environmental Protection Agency stated in its 1994 Dioxin Reassessment draft that the "general population's current body burdens and exposures of dioxin are already at levels which affect our health."  One of the health effects that the EPA specifically identifies is a "higher probability of experiencing endometriosis and the reduced ability to withstand an immunological challenge."

The consequences of exposure to persistent chemicals like dioxin are serious and irreversible.  Once in our bodies they remain there accumulating over time, mimicking natural hormones, disrupting our immune systems, and causing ill health.  As families who suffer because of endometriosis, we have the right to know about our exposure to these toxins.  As members of our communities, we have the right to demand the elimination of these chemicals from our environment in order to protect us all.  The Endometriosis Association supports the public's right to know and actively participates in community efforts to stop exposure to dioxins so human health and the environment will no longer be compromised.

If you would like to learn more about toxins and their role in endometriosis, please contact our, Environmental Coordinator.  The time has come for women with endometriosis to take action on this issue so that no family will again have to experience the horror of watching loved ones live with painful, chronic diseases that could have been prevented.  Help us prevent another generation of endometriosis.

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The Endometriosis Association is a founding member of Health Care Without Harm (HCWH), a coalition of over 200 organizations in 9 countries dedicated to reforming the environmental practices of the health care industry.  HCWH (www.noharm.org) advocates policies that eliminate the indiscriminate incineration of medical waste and calls for change in purchasing and materials management practices of hospitals and purchasing groups.  HCWH researches and promotes safer waste disposal alternatives and educates the public about dioxin, mercury, and other endocrine-disrupting chemicals.

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