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Journal of Endometriosis Announced
In a very exciting development, due to the foresight of a Milan, Italy publisher, Diego Brancaccio, M.D., our field now has its own dedicated research journal. The Editor-in-Chief of the new Journal of Endometriosis is Felice Petraglia, M.D.; Professor & Chair of Obstetrics & Gynecology, University of Siena, Italy; the Immediate Past President of the Society of Gynecologic Investigation; and a recognized leader in our field. We have been privileged to be working toward a new research collaboration with Dr. Petraglia and his team for the last three years.
For the first time ever, all important research related to endometriosis has an obvious destination. Until now, research has had to be published in journals with a somewhat different orientation – fertility, surgery, reproductive medicine – when we know that endometriosis is so much more, affecting girls as young as eight and some women all the way into their 80s. In addition, articles related to endometriosis that did not fit into the criteria for other journals had no home and often were published in unusual journals where the scientists and clinicians in our field were unlikely to see them.
A huge congratulations to Felice and his team, including Assistant Editors Pasquale Florio, M.D., and Stefano Luisi, M.D., both of Siena, Italy; the associate editors (five of whom are Advisors to the Association), and the editorial board, for an important and exciting development! read more...
teams with prestigious Vanderbilt University School of Medicine TO CREATE DEDICATED
Hope is that dedicated, concerted effort will unlock secrets to endo
cause and cure
Mary Lou Ballweg, Endometriosis Association President
Vanderbilt University School of Medicine, one of the nations 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:
- a research facility
dedicated to addressing the mechanisms responsible for causing endo;
- research laboratory
space of 5,000 - 6,000 square feet;
- the full support
and assistance of the institution, access to critical research equipment,
and the prestige and reputation of the Vanderbilt name;
- an up-front investment
of $2 million in the facilities and programs.
While this may
all sound like the stuff of fairy tales, its 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. Vanderbilts
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 Vanderbilts 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,
Vanderbilts 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 diseasewomen with endometriosis and their families.
The Associations 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
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 endometriosischronic
pelvic pain, pain with sex, gastrointestinal and bladder problems, infertility,
and othersbut 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, Hashimotos
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, lets look at this
disease as a whole, rather than just trying to find one little piece of
scientific truth at a time. Lets take a systematic,
dedicated, team approach to it. Lets go about this in a way
that can really find the answers! As the EA board phrased it: Dont
stop until we get a cure!
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
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!
Vanderbilt chose the Endometriosis Association
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
- Our research registry
on endometriosis was the firstand largestin 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 Associations 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
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 goaleradicating
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,
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.
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.
Invest in Your Health and in the Health of Your Loved Ones
by Becoming a Member Today!