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TOPIC: Who We Are
Co-Owner / ERC Exec Board Member
7:44 AM, 05/02/08
Who We Are
About the Endometriosis Research Center
Founded in 1997 BY a woman with Endo FOR women with Endo, and run today by those who LIVE every day with Endo, your ERC is here to help you any way we can! Please read on to learn how weve been improving the lives of those with this insidious disease for over a decade now, what our plans for the future are, how we can help you, how you can get involved, and how to become empowered over Endometriosis. We hope youll consider supporting our worthy efforts today.
WHY WE ARE DIFFERENT
YOUR EndometriosisResearchCenter is
. Founded by Executive Director Michelle E. Marvel in early 1997, the ERC has spent over a decade tirelessly addressing the growing International need for Endometriosis research, education, awareness and support.
We are unique in that unlike similar organizations, there is no fee to join, participate in or benefit from the ERC's programs. We exist solely on donations; there is no other organization offering free Endometriosis support and information to the lay and professional communities concerning this disease anywhere in the world.
With our world headquarters located in South Florida, USA, our organization is pleased to host a virtual network of staff and volunteers around the world who help implement the ERC's various programs in the online and local communities on a global basis. The ERC maintains and offers a vast database of accurate materials on every aspect of Endometriosis to practitioners, researchers, patients of all ages and their loved ones, and all those interested in the disease. Unlike others, we also do not accept funding from GnRH-agonist manufacturers, nor do we accept donations from physicians in exchange for providing referrals. Similarly, no ERC executive staffer draws a salary; instead, those funds are put back 100% into YOUR organization.
WE ARE AN ESTABLISHED PRESENCE IN THE GLOBAL ENDOMETRIOSIS COMMUNITY
YOUR ERC works with the best of the research and healthcare industry, striving together to make a positive global impact. The ERC has the privilege of collaborating with Medical & Professional Advisory Panel from the global Endo community.
Additionally, the ERC believes ALL research is worthwhile, no matter how large or small or popular the study initiative may be. To that end, we assist industry leaders with developmental studies and data collection on the disease; lobby the National Institutes of Health and similar foundations in support of various research grants; and so much more. Our end goal is always the same the promotion of research and finding new help and answers for those suffering, not the promotion of the ERC name!
We are actively involved in ongoing disease research, ranging from recruitment for clinical trials on proprietary new treatments to participation in genetic research studies for various biotech companies focused on the discovery of novel therapeutics and diagnostics to address significant unmet medical needs in Endometriosis. We were also involved in the A-Fem Medical pilot study conducted in the mid-1990s to validate *the worlds first* self-collection kit and testing method to attempt to provide a screening system for Endometriosis. The preliminary results were promising, particularly for undiagnosed women and adolescents, and this novel work has now become an area of focus for the global biotech community.
The ERC has previously conducted our own study into a potential relationship between the use of Menstrual Cup devices and Endometriosis, in association with the esteemed President of Associated Pharmacologists & Toxicologists and Author of the prestigious ReproTox Database. Our organization also performed a large product focus study involving the first unique, all-natural topical product designed specifically for menstrual cramping. We recently embarked on a small-scale study into a specific biological sample concentration discovered in women with the disease in collaboration with a leading clinical diagnostic testing company, and completed a product focus study with the manufacturer of an item designed specifically for women with Endo. We have also previously conducted a study of medical professionals in collaboration with Agile Therapeutics, using data collection and analysis to determine the scientific formulation of a birth control patch compound, to name but a few efforts.
Other collaborations include, but are not limited to, the PETAL Study, Amgen Praecis Corporation; EmerGEN; Neurocrine Bioscience; FemmePharma; the International OxeGENE Study Group; the National Womens Health Information Center; The Office on Womens Health/U.S. Department of Health & Human Services; Helica TC Corporation; Zonagen Corporation; and many others.
Additionally, we were the first organization in the world to recognize, support and promote the groundbreaking research into Aromatase Inhibitors and Angiogenesis, growing areas of interest to the worldwide research community.
We also investigate controversial issues in Endometriosis research to ensure that all facets of the disease are adequately addressed; in some instances, even publicly challenging popular study conclusions. For example, we refuted YaleUniversitys Sexual Activity, Orgasm & Tampon Use are Associated with a Decreased Risk of Endometriosis report in the Journal of Gynecologic & Obstetric Investigation, citing extensive evidence as to why this theory was flawed. More recently, we also publicly confronted an Expert Panel Consensus Report in the Journal of Fertility & Sterility advocating the use of pre-diagnostic GnRH drugs.
WE ARE LEADING THE WAY IN DISEASE EDUCATION & AWARENESS
YOUR EndoResearchCenter is the global leader in bringing Endometriosis awareness to the forefront of society. The ERC has collaborated on countless books, publications, and videos pertaining to the disease over the years, as well working with the extended media to bring education and awareness to lay and professional societies alike. Additionally, the ERC was pleased to host the Internets first free Endometriosis educational webcast during our Symposium and workshops held at the ERC Conference at our nation's capital in Washington, DC. We were also presenters at the country's first national EndoWalk for Awareness. We are the proven leader in awareness initiatives, and ours was the first Endometriosis advocacy organization in the country to undertake the important task of raising awareness among policymakers. Subsequently, the ERC is nationally renowned for our pioneering efforts and successes in the Legislative arenas, helping to raise recognition about issues pertinent to Endometriosis education and research at the governmental level.
It is our belief that no one with this disease should ever suffer in silence, and we continue to strongly advocate for early intervention, timely diagnosis and efficacy of treatment. We raise awareness and provide education about Endometriosis not only to patient and medical communities through our free Symposiums, meetings and materials, but on State and Federal levels as well. For example, we have testified before the California State Legislature at the invitation of Assemblyman Dennis Cardoza on behalf of Assembly Bill 2820, a crucial health bill calling for independent research into the presence of dioxins in feminine hygiene products and the subsequent risks these toxins pose to women and their children. AB 2820 was approved by majority vote and passed on to the Senate Committee on Health & Human Services.
Our organization has also been very successful over the years in working with concerned legislators and policymakers to establish Resolutions formally recognizing the need for disease awareness throughout society. To that end, in addition to the country's first-ever national resolution, the states of New York, New Mexico, Colorado, Florida, Michigan, California, Wyoming, Utah and Pennsylvania are among those that have all passed Resolutions with the ERC officially recognizing the Month of March as "Endometriosis Awareness Month" as well.
We also offer educational materials and monthly newsletters containing extensive, unbiased and timely information about all aspects of this disease to all those interested through our various on- and offline information portals. Articles, information, research news and updates, and much more are all available through our website (which freely features extensive data on the disease), through member mailings, via our online groups, and more all for free, of course! Our educational library which is not funded or supported by any companies, thereby influencing our editorial content - contains hundreds of fact sheets and articles on every scope of this confusing illness.
We are also the only organization in the world to offer health care professionals access to important and timely data through our Adopt-a-Doc program (for free, of course).
WE PROVIDE THE SUPPORT CRUCIAL TO LIVING WELL WITH AND IN SPITE OF - ENDOMETRIOSIS
The EndometriosisResearchCenter is leading the way through our patient recruitment, education, and vast support programs. Not only for women with the disease but also for those who love them, YOUR ERC hosts many active, in-person support groups worldwide, and is the owner of the Internet's largest electronic Endometriosis support group - the first formally endorsed, organization-sponsored online group of its kind. And, because we recognize support needs are different, we also honor young women with Endometriosis ages 25 and under through our "Girl Talk" Program, a specific support and education program tailored to meet the needs of young women and adolescents who have, or think they may have, the disease. In addition to providing patient advocacy and education, Girl Talk raises awareness about Endometriosis and strives to improve patient care among practitioners offering healthcare services to young women. Were trying to change things for our daughters of tomorrow.
The ERC also assisted John & Carey Blondin, founders of MENDO, with the implementation of the male support group, the first of its kind in the world for Men Who Love Women With Endo.
WE BELIEVE THAT WORKING WITH OTHERS BRINGS ABOUT THE BEST RESULTS
The ERC enjoys collaborative relationships with similar like-minded foundations. We are grateful for the opportunity to collaborate with and support other worthwhile organizations, like the National Endometriosis Society (United Kingdom), Associazione Italiana Endometriosi (Italy), the Endometriosis SHE Trust (United Kingdom), Endometriosis.org, the global foundation, the Endometriosis Care Centre of Australia (ECCA), and RESOLVE, the national infertility organization, to name but a few. Additionally, the ERC is represented in the World Endometriosis Society, the World Endometriosis Research Foundation, the American Society for Reproductive Medicine, the international PAX Society, the National Pain Foundation, and the American Chronic Pain Association. The ERC is also a Founding Partner in the Society for Women's Health Research, a collaboration sponsored by the Alliance for Women in Clinical Research. A cruelty-free charity, the ERC is also a member of the Physicians Committee for Responsible Research Humane Charity Initiative and the Primate Freedom Project's "Moratorium on Primate Research." The Guidestar Foundation, a Federal charity watchdog organization, formally recognizes the organization as a member in good standing.
The ERC believes it is not all about one central figure: its about all of us. Led by an Executive Director who herself suffers from this disease, our close-knit team members work together towards our common goals and are highly visible and accessible in the Endo community. We also collaborate regularly with many individuals from different professional and patient organizations around the world. Our mission and our core team are committed to transparency and availability; when your support, education, awareness and research needs arise, were there. When one of us has a success, its a success for all of us in the Endo world!
YOU DECIDE WHAT YOU NEED FROM US WELL DO OUR BEST TO PROVIDE IT
Your EndoResearchCenter is member-driven. Our programs and initiatives are directed by you, the woman or girl with Endo. We recognize that empowerment over this disease comes through action, and to that end, we offer opportunities for many different ways to get involved. Whether it be fundraising to support our initiatives, leading a support group, helping to raise awareness and promote Endo legislation, or volunteering for the ERC in any capacity, our programs are all directed by our members. Weve held such fun and festive member-run events as luaus, awareness walks, picnics, golf tournaments and yoga days in the name of fundraising for a cure, to selling a wonderful, member-authored Endo cookbook and Endo-branded clothing/accessories, to collaborating on the best selling Endo books with leading authors, to holding serious, educational presentations and testimony before governmental organizations in the name of raising awareness and providing education.
We welcome and encourage all ideas and proposals on how youd like to get involved and help make a difference; after all, this is YOUR organization. Anyone can be involved, on any level. How much - or how little - is up to you. Our existence depends on the donations of those who support our mission, so join us today!
Please consider supporting us to help shape the future of YOUR EndoResearchCenter. Be sure to explore all the facets of our foundation to find out how to obtain free information about all aspects of the disease, obtain copies of our educational monthly newsletter, keep abreast on research, reach others with Endo who understand, get involved in any of our many efforts, or just to feel like you're no longer alone with this chronic illness.
We hope we can count on your support. *Our efforts depend on YOU!*
Please see our informative website for more details.
Internet Home of the ERC
ERC's Girl Talk Listserv, for those under 25
-- Edited by ERC at 10:47, 2008-05-02
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