WHO IS THE ENDOMETRIOSIS RESEARCH CENTER?
Thank you for taking the time to learn more about our efforts concerning Endometriosis, a painful reproductive and immunological disease affecting more than 8.5 million women and teens in North America alone, with 176 million more worldwide. Our organization, the Endometriosis Research Center (ERC), was founded in 1997 to address the growing international need for disease research, education, awareness and patient support.
The Endometriosis Research Center was founded because of the limited research, support, education and awareness for Endometriosis. No one with this disease should ever feel alone, and one of our goals is to create enough awareness to ensure that women and adolescents - and their loved ones - never have to feel that way again.
The ERC is a 501(c)3 tax-exempt, tax-deductible organization that operates from contributions generously donated by individuals, corporations and foundations that share our goals of making a positive difference in the lives of those with the disease, and ultimately, of finding a cure. The ERC does not accept funding from the makers of GnRH agonists, as we feel such funding presents a conflict of interest.
Furthermore, unlike similar women’s health organizations, we are unique in that we do not have a membership fee, and there is never a cost to participate in or benefit from the ERC’s education and support programs.
We are an international organization, with headquarters in beautiful South Florida, USA. We are pleased to have a virtual network of staff and volunteers from around the world who help implement our programs in both the online and local communities on a global basis. Founded by Executive Director Michelle E. Marvel in early 1997, the ERC strives to improve the quality of life for women and girls with Endometriosis through our extensive programs and outreach efforts.
We are pleased to maintain and offer a vast database of unbiased and accurate materials, educational sheets, videos, newsletters and articles on every aspect of Endometriosis to practitioners, patients and all those interested in the disease. In addition, the ERC works with legislators and government officials to facilitate proper funding for Endometriosis research; assists medical industry leaders with developmental studies and data collection on the disease; lobbies the National Institutes of Health and similar foundations in support of various research grants; attends and presents at health fairs, medical symposiums and similar events; maintains one of the world’s most extensive Endometriosis patient registries; and so much more.
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 to validate the world’s 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. Our organization also performed a recent product focus study involving a unique, all-natural topical product designed specifically for menstrual cramping. The ERC also conducted a study of medical professionals in collaboration with Agile Therapeutics, using data collection and analysis to determine the formation of a birth control patch compound. Other collaborations include Amgen Praecis Corporation; Neurocrine Bioscience; the International OxeGENE Study Group; the National Women’s Health Information Center; The Office on Women’s Health/U.S. Department of Health & Human Services; Helica TC Corporation; Zonagen Corporation; and many more.
The ERC also investigates 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 Yale University’s “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 publicly confronted an “Expert Panel Consensus Report” in the Journal of Fertility & Sterility advocating the use of pre-diagnostic GnRH drugs. Our position on these matters can be viewed online at http://endocenter.org/endostudy.htm and http://endocenter.org/pdf/PreDiagnosisGnRH.pdf, respectively. Currently, we are conducting our own research concerning the potential risks associated with Menstrual Cups devices and Endometriosis in association with renowned Reproductive Toxicologist, Dr. Armand Lione. Dr. Lione is the President of Associated Pharmacologists & Toxicologists in Washington, DC, the author of the prestigious ReproTox database, and an Official with the Reproductive Toxicology Center in Bethesda, MD.
In addition to our research facilitation and patient education programs, we also offer a vast support network for those with the disease and their loved ones. The ERC is pleased to host over 50 active, in-person support groups worldwide, and is the owner of the Internet’s largest electronic Endometriosis support group, currently with over 3,000 participants from around the globe. Access to location-specific listservs is also available, which are hosted by ERC support group leaders. For male partners of women with Endo, we recommend John Blondin’s group for men only, MENDO, located online at:http://www.endocenter.org/mendo/. In addition, until recently, we were the first and only Endometriosis organization to formally recognize and support the unique needs and perspectives of the lesbian woman with Endometriosis.
In honor of young women with Endometriosis ages 25 and under, the ERC launched “Girl Talk TM.” Girl Talk TM is 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 TM raises awareness about Endometriosis and improves patient care among practitioners offering healthcare services to young women.
Education & Support
Endometriosis affects twice the number of Alzheimer’s patients and seven times those with Parkinson’s Disease, and is a leading cause of female infertility, chronic pelvic pain and gynecologic surgery. It accounts for nearly half of the 600,000 hysterectomies performed in the United States annually. It is more prevalent than breast cancer, yet continues to be treated as an insignificant, obscure ailment. Recent studies have even shown an elevated risk of certain cancers in women with Endometriosis. Endometriosis can be so painful as to render a woman or teen unable to care for herself or her family or attend work, school or social functions. Endometriosis affects every aspect of a woman’s life, from her self-esteem to her relationships to her ability to be a contributing member of society.
Even in this age of medical advances, Endometriosis remains a conundrum to patients and practitioners alike. The disease can only be diagnosed definitively through invasive surgery, and there is no absolute cure. The average delay in diagnosis is a staggering 9 years, and a patient may seek the counsel of 4 or more physicians before her pain is addressed.
Though Endometriosis is one of the most prevalent illnesses affecting our society today, disease research continues to remain significantly under-funded. In fiscal year 2000, the National Institutes of Health planned to spend $16.5 billion on research. Of that funding, only $2.7 million was earmarked for Endometriosis; amounting to approximately 40 cents per patient, in stark contrast to other illnesses such as Alzheimer’s Disease and Lupus, which received approximately $105 and $30 per patient, respectively. The ERC strives to improve the public focus on Endometriosis, and provides extensive materials, fact sheets, videos, newsletters and articles on every aspect of Endometriosis to practitioners, patients and all those interested in the disease. Our organization raises awareness about Endometriosis throughout the medical and lay communities, works with Government officials to facilitate proper funding for Endometriosis research, and assists medical industry leaders with developmental studies and data collection. The ERC is also pleased to host over 50 support groups worldwide and is the owner of the Internet’s largest electronic Endometriosis support group, currently with nearly 3,000 participants.
In 2000, the ERC organized and implemented a unique and groundbreaking opportunity for world-wide education and awareness regarding Endometriosis. World-opinion leaders on the disease brought forth the most current research and information on Endometriosis at this one-day Symposium entitled, Endometriosis 2000. The first of its kind, the Endometriosis 2000 Symposium was filmed and later broadcast on the internet so individuals unable to attend had the opportunity to watch the program right from their own home. Furthermore, VHS copies were also made available. Due to the overwhelming success of Endometriosis 2000, the ERC implemented Endometriosis 2001 a year later, which followed the same format as the original symposium. Without the ERC’s co-presenter, Amgen Praecis, neither Symposium would have been as successful.
Amgen Praecis supported the ERC’s education program with unrestricted grants in 2000 and 2001. Developers of the new, investigational medication, Abarelix, Amgen Praecis completed the FASTER (First Abarelix-Depot Study for Treating Endometriosis Pain Rapidly) Study. The Study involved nearly 400 patients in multi-site, blinded trials to determine whether the medication is safe and capable of relieving pain associated with Endometriosis faster and with fewer side effects than current therapies.
The ERC has the privilege of working with leaders in the ongoing study and treatment of the disease. ERC programs and operations are governed by an Executive Board of Directors and a Medical & Professional Advisory Panel consisting of pioneers in Endometriosis research and treatment; including Andrew Cook, MD, Director of Vitalcare Institute of Center in Los Gatos, CA, world-renowned for his dedication to Endometriosis research and treatment; Armand Lione, Ph.D., President of the Associated Pharmacologists & Toxicologists Association, David B. Redwine, MD, Director of the St. Charles Medical Center Endometriosis Treatment Program and founder of the innovative LAPEX procedure for Endometriosis, in Bend, Oregon; Serdar Bulun, MD, RE, Director of the Molecular Genetics & Reproductive Endocrinology at Northwestern University in Chicago, IL, known for his groundbreaking research on Aromatase Inhibitors; Nabil Husami, MD, Director and Founder of the Endometriosis Research & Treatment Center at Columbia University Medical Center in New York City, NY; Nancy Petersen, RN, Founder of the Endometriosis Treatment Program at St. Charles Medical Center in Bend, OR; Donna Laux, MA, former Program Director of the Center for Endometriosis Care in Atlanta, GA; Glenda Motta, RN, MPH, ET, of Washington, DC, co-Author of “Coping With Endometriosis” and “Successful Living With Endometriosis;” William Fleming, PhD, Vice Chairman of A-FEM Medical Corporation, also in Oregon, Linda Howard-Smith, Nurse Practitioner with the Vitalcare Institute of Health in Los Gatos, CA; and many other distinguished professionals. The organization is also implementing a unique program for Professionals only, which is designed to encourage global collaboration on, and advance the study and treatment of, all aspects of Endometriosis for researchers, physicians, scientists and healthcare professionals from all over the world.
The ERC also enjoys collaborative relationships with similar like-minded foundations, including the National Endometriosis Society (United Kingdom), Associazione Italiana Endometriosi (Italy), the Endometriosis SHE Trust (United Kingdom), the Endometriosis Care Centre of Australia (ECCA), and RESOLVE, a national infertility organization. Additionally, the ERC is represented in the World Endometriosis 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, and a member of 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.
Since the ERC was founded, we have held numerous fundraisers including, “Cruising For A Cure” in October 1997; “Walk for the Women You Love” in February 1998; the “Classic Swing” Golf Tournament in June 1998; and the ERC National Raffle in October 1998 and March 1999. Generous individual donations, corporate sponsorships, raffle and silent auction proceeds along with event attendees have supported these fundraising events.
Additionally, the ERC works with GBI Marketing bi-annually (spring and autumn) to host international Yankee Candle fundraisers. Through the ERC’s volunteers, we have raised thousands of dollars annually through this fundraiser.
In October 2001, we participated in an event known as The Shopping Benefit, sponsored by Bloomingdale’s Department Store. This annual fundraising event is held throughout South Florida at each Bloomingdale’s retail location (Miami, Aventura, Boca Raton & West Palm Beach). The ERC was successful in its efforts, and plans to continue participating each year. In addition to South Florida, Bloomingdale’s holds this event in local communities throughout the United States where the company has retail locations. It is the ERC’s goal to have volunteers living in these areas to also coordinate and participate in this fun fundraising event.
Our organization also reaps fiscal benefits from member support of our online store, located at http://www.cafepress.com/ERC. The ERC’s online store allows interested parties to support the ERC and our efforts by purchasing various Endometriosis awareness items. We are also pleased by the support of many various fundraisers held by our members and supporters throughout the year, all of whom designate the ERC as their recipient charity of choice.
As described, the ERC has enjoyed much fundraising success. With our dedication and continued public outreach, we will continue to gain the financial support to assist us in our future growth through innovative fundraising activities.
Endometriosis affects more women than breast cancer. However, the general public is not aware of the disease. Among many of those who are aware of this affliction, it is mistakenly believed to be an insignificant issue because of the misconceptions that have developed through the years. “My sister had that and she was ‘cured’ with birth control pills;” “I had that and it ‘went away’ when I got pregnant;” “My friend had that, and a hysterectomy ‘fixed’ her” are all common fallacies about Endometriosis. The misconception develops because there are women in the world who have had surgery, become pregnant or taken hormones and – temporarily - no longer suffer symptoms of Endometriosis. However, speak with the millions of women and girls who live with chronic daily pain, and they will tell you that having Endometriosis is no life at all.
To assist us with our awareness goals, the ERC has developed an Awareness Campaign that includes branded awareness products, including t-shirts, water bottles, license plate frames and more. Public knowledge about our organization and Endometriosis is very important, and is accomplished through the ERC’s ongoing efforts, including offering awareness items, press releases, feature stories, internet, speaking engagements, word of mouth, advertising and more.
The ERC is also the premier awareness organization where legislative efforts are concerned. We raise awareness and provide education about Endometriosis not only throughout patient and medical communities through our free Symposiums, meetings and materials, but on State and Federal levels as well. For example, in late 2000, we 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, the states of New York, Colorado, Florida, Michigan, California and Pennsylvania have all passed Resolutions officially recognizing the Month of March as “Endometriosis Awareness Month.” Our most gratifying success, however, came in late October 2002 when Congress unanimously passed our Country’s first-ever National legislation, House Concurrent Resolution 291. Introduced on behalf of the ERC by Congressman Howard “Buck” McKeon and supported by numerous Co-sponsors, H.Con.Res.291 formally proclaimed March as National Endometriosis Awareness Month. H.Con.Res.291 also expresses the sense of the United States Congress that it “strongly supports the ERC’s efforts to raise public awareness of Endometriosis throughout the medical and lay communities and recognizes the need for better support of patients with Endometriosis, the need for physicians to better understand the disease, the need for more effective treatments, and ultimately, the need for a cure.”
The Endometriosis Research Center is open to all those concerned with Endometriosis: medical professionals, researchers, women of all ages with Endometriosis, and anyone interested in the disease. Help us make a difference by making a donation to the ERC today. Together, we can find the cure so that our daughters will not suffer as we have.
all women and girls who have, or think they may have, Endometriosis and the healthcare/medical industry that serves them.