Patty and Jane
Rogers, AR , United States
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| Hope 2 Endure
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All money raised goes directly to the Endometriosis Research Center to improve the quality of life for those with the disease, seek more effective treatments for Endometriosis, and ultimately, find a cure.
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$925
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ENDOMETRIOSIS RESEARCH CENTER AND WOMENS HOSPITAL INC
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DELRAY BEACH , FL
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Accepting Online Donations
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630 IBIS DR , DELRAY BEACH , FL
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EIN:
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Endometriosis is a painful reproductive and immunological disease in which tissue similar to the uterine lining (endometrium) migrates outside the womb and implants in other areas of the body. The disorder, for which there is no absolute cure, affects nearly 176 million women and girls globally (Adamson et al. J of Endometriosis 2010;2 (IN PRESS). Often stigmatized as simply “killer cramps,” symptoms include painful periods, pelvic pain at any point in a woman or girl's cycle, infertility, pain with sexual activity, gastrointestinal and urinary tract difficulties and much more. The disease can even implant in areas like lungs, diaphragm, and in some cases, the brain. Endometriosis affects women and girls from all walks of life ranging from adolescence to post-menopause, and can be so painful and life-altering as to significantly impair a woman or girl’s ability to care for herself, her family, pursue her career, attend school or social functions, or go about her normal routine.
Moreover, research has shown an elevated risk of certain cancers and autoimmune disorders in those with Endometriosis, as well as malignant changes within the disease itself. Researchers remain unsure as to the definitive cause of Endometriosis, which can only be diagnosed through surgery, though studies indicate that genetics, immune dysfunction and exposure to environmental toxicants may be contributing factors. The economic impact of Endometriosis is staggering: businesses lose, literally, *billions* of dollars each year in lost productivity and work time because of the disease.
Endometriosis is more than just “painful periods.” The disease remains misdiagnosed, misunderstood and ineffectively treated, despite being one of the most prevalent causes of hysterectomy, infertility and pelvic pain in women and girls around the globe. Despite hallmark symptoms, the average delay in diagnosis continues to remain an astounding 9 years, and a patient will seek the counsel of 5 or more physicians before her pain is adequately addressed. It is not unusual for a patient to undergo repeated surgeries and embark on different medical therapies; none offering long-term relief and many carrying highly negative side effects. A growing number of younger women are also being diagnosed annually, with studies indicating that as many as 70% of teenagers with chronic pelvic pain ultimately have Endometriosis as proven by surgery. Studies have also shown that Endometriosis may have an even bigger impact on younger patients: in those under 22 years of age, the rate of recurrence was double that of older women (35% versus 19%). Studies revealed that the disease behaves differently in younger women, leading researchers to believe it may be a different form of Endometriosis altogether. The ERC is striving to make a positive impact on all those concerned with the disease to ensure that society begins recognizing the far-reaching impact this illness continues to have on patients of all ages, not just those trying to conceive, so that that our daughters do not continue to suffer as their mothers and sisters have before them.
Founded by Executive Director Michelle E. Marvel in early 1997, the ERC tirelessly addresses the ever-growing need for Endometriosis research, education, awareness and support on a global basis. We are unique in that unlike similar organizations, there is no never a fee to join, participate in or benefit from the ERC's programs. A free, truly non-profit foundation in every sense of the word, 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 throughout the world.
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. Additionally, unlike other organizations, we do not accept funding from GnRH-agonist manufacturers nor do we accept donations from physicians in exchange for providing referrals to women and girls in the global Endometriosis community. Similarly, no ERC executive staffer draws a salary; instead, those funds are put back 100% into the organization where they are best utilized on behalf of the global community.
We are an established presence in the global Endometriosis community. The ERC works with the best of the international research and healthcare industry, striving together to make a positive global impact. The ERC also 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 goal is always the same – the promotion of research and finding new help and answers for those suffering, not self-promotion – an industry-wide drawback among so many others.
We are always actively involved in ongoing 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 the coordinators of 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 a primary area of focus for the global biotech community. The ERC has also previously conducted a 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, as well as on similar products including a specially-designed heating pad for women and girls with the disease. Our early involvement paved the way for further product developments which are now being embraced by other organizations and used by patients everywhere. We were also involved in the proprietary study into a specific biological sample concentration discovered in women with the disease in collaboration with a leading clinical diagnostic testing company (the first of its kind). We previously conducted a study of medical professionals in collaboration with a leading biotech firm, using data collection and analysis to determine the scientific formulation of a proprietary compound. Other collaborations include, but are not limited to, the National Women’s Health Information Center , the Office on Women’s Health/U.S. Department of Health & Human Services; and countless others. We work with, and support the endeavors of, various Endometriosis foundations and organizations around the world to achieve a unified goal on behalf of all those suffering. We are particularly proud of our ongoing collaboration with the Endometriosis Foundation of America, a like-minded organization founded by renowned surgeon, Tamer Seckin, MD and international celebrity/Top Chef host, Padma Lakshmi.
Our organization was the first to ever implement a unique program designed to raise awareness and education among professionals associated with the disease. By developing the ERC’s EndoMED/Adopt a Doc Program, we have been able 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. We are also attempting to further define Endometriosis epidemiology, and to that end have been working to establish a formal disease registry, the first of its kind. Additionally, we were the first organization in the world to recognize and support research into Aromatase Inhibitors, now a crucial area of interest in the worldwide scientific 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 publicly refuted Yale University ’s highly touted “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. We also publicly confronted an “Expert Panel Consensus Report” in the Journal of Fertility & Sterility promoting the use of GnRH drugs over more efficacious treatments, as well as took a public and highly vocal stance against the bias that many other organizations exhibit based on their funding and donor sources.
The Endometriosis Research Center ’s prestigious Medical & Professional Advisory Panel is comprised of prominent individuals who support our mission and benefit the ERC with their expertise in many different areas, helping to guide, support and implement the mission and goals of our organization. Panel Members include individuals who volunteer their time and expertise from the medical, scientific, financial, clinical research, media, corporate and legal professions. The ERC has the privilege of collaborating with existing Medical & Professional Advisory Panel members such as Robert B. Albee, Jr., MD, Founder of the Center for Endometriosis Care, internationally recognized for his expertise in Endometriosis excision; Dr. Ken Sinervo, Medical Director of the Center for Endometriosis Care; David Redwine, MD, of the St. Charles Endometriosis Treatment Program, Cindy Mosbrucker, MD, a renowned excision surgeon; Serdar Bulun, MD, RE, Director of the Division of Reproductive Biology Research at Northwestern University Feinberg School of Medicine, known for his groundbreaking research on Aromatase Inhibitors; Nancy Petersen, RN, Founder of the St. Charles Endometriosis Treatment Program and global Endometriosis educator; William Fleming, Ph.D., Vice Chairman of A-FEM Medical, Dr. Armand Lione, President of Associated Pharmacologists & Toxicologists and author of the prestigious ReproTox Database in Bethesda, MD; Michael Clifford, M.S.O.M., Dipl Ac. (NCCAOM), L. Ac., a health and wellness professional from Arizona; Dr. Jennifer Ritchie-Goodline, a Clinical Psychologist in private practice with a focus on women’s issues; and countless others. The ERC also draws on the expertise of such thought leaders as those at Cleveland Clinic Florida , the Center for Endometriosis Research & Treatment at Columbia University Medical Center in New York City , and many other prominent members of the global Endometriosis community.
Our foundation is a global leader in bringing Endometriosis awareness to the forefront of society. The ERC has collaborated on countless books, publications, documentaries, 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 the first to sponsor and host the Internet’s original – and of course, free - Endometriosis educational webcast during our Symposium and workshops held at the ERC Conference in our nation’s capital in Washington , DC . We were also presenters at the country’s first national “EndoWalk for Awareness” at the invitation of the five independent founders and organizers of that event. 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. To that end, the ERC’s efforts have resulted in the country’s first-ever National Endometriosis Awareness Resolution, unanimously passed by Congress. A most gratifying success on behalf of American women and girls with the disease, the 107th Congress of the United States formally recognized the disease on the Floor of the House through the introduction and adoption of H.Con.Res.291. This Bill formally proclaimed March as National Endometriosis Awareness Month and expressed 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." Though March is universally celebrated as Awareness Month, ours was the first-ever nationally endorsed resolution read on the house floor to formalize March as Endometriosis Awareness Month. Additionally, several additional state and local Resolutions have also been passed on the ERC’s behalf across the nation. We have also testified before the California State Legislature by invitation 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.
It is our belief that no one with this disease should suffer in silence, and we continue to strongly advocate for early intervention, timely diagnosis and efficacy of treatment. Our primary concern is working hard to improve the quality of life for all those affected by this illness, at any age, race or socioeconomic status. We keep our educational library - which is not funded or supported by any companies, thereby influencing our editorial content - and many more resources and materials completely free and easily accessible to all. Not only for women with the disease but also for those who love them, the ERC also hosts active support groups worldwide, and is the owner of the Internet's largest electronic, organization-owned Endometriosis support group. The first online group of its kind, the free ERC Endo Angel Listserv has been providing free education and support to interested parties in a safe environment for well over a decade. 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 in adolescents and strives to improve patient care among practitioners offering healthcare services to young women. We’re trying to change things for our daughters of tomorrow. We were also the first Endometriosis organization to address the unique perspective of, and offer specifically tailored materials to, the underserved community of lesbians with Endometriosis, through our groundbreaking and unique "Women 2 Woman" program. 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 are pleased to enjoy collaborative relationships with similar like-minded foundations. We are grateful for the opportunity to collaborate with and support other worthwhile organizations, such as the global foundation, Endometriosis.org, the National Endometriosis Society ( United Kingdom ), Associazione Italiana Endometriosi ( Italy ), the Endometriosis SHE Trust ( United Kingdom ), the Endometriosis Care Centre of Australia (ECCA), Endometriosis New Zealand , RESOLVE, the national infertility organization, and others. 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, the American Chronic Pain Association, the Endometriosis Foundation of America, the American Medical Writer’s Association, the Association of Reproductive Health Professionals, the Association of Operating Room Nurses, ResearchGate, The National Women’s Law Center, and many other prestigious organizations. We are 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 Physician’s 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 our organization as a member in good standing for well over a decade. Led by a Founder and Executive Director and a team of dynamic individuals who themselves have suffered from this disease or care for someone who has, our close-knit executive committee works 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 support, education, awareness and research needs arise, we’re there. We believe when one of us has a success, it is a success for all in the Endo world.
The Endo Research Center is community-driven. Our programs and initiatives are directed by the women and girls with Endo and the professionals serving them. We recognize that empowerment over this disease comes through action, and to that end, we offer opportunities for many different – and autonomous - ways to get involved. Whether it is 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 participants. We’ve held such fun and festive women-run events as luaus, salon days, concerts, awareness walks, yoga days and so many more in the name of fundraising for a cure. We’ve sold a wonderful, community-authored Endo cookbook and continue to offer the first Endo-branded clothing/accessories. We’ve worked with celebrities such as tennis pro Mary Jo Fernandez raise awareness with us, and collaborated with the leading authors of the best selling Endo books. We are hosting a stamp campaign to have Endo recognized on a U.S. postal stamp. We’ve hosted academic/educational presentations and presented testimony before governmental organizations in the name of raising awareness and providing education. And so much more! We welcome and encourage all ideas and proposals on how everyone can get involved and help make a difference. Anyone can be involved, on any level. How much - or how little - is up to the individual.
The Endometriosis Research Center is open to and free for all those concerned with Endometriosis: medical professionals, researchers, women of all ages with Endometriosis, and anyone interested in the disease. It is the ERC's goal to make a positive difference in the lives of the millions suffering from this disease. Please consider our worthy efforts today. With your support, we can make great strides in the right direction. Our existence depends on the charitable donations of those who support our mission of improving the lives of the countless millions of women and girls worldwide affected by this insidious disease, so please consider lending your support to our imperative efforts today.
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Anonymous
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$50.00
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Message: Good luck and best wishes to all suffers
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adam burt
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$100.00
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Message: Good luck on reaching the $10k goal.
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Ben Yates
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$200.00
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Message: This donation is for, and on behalf of LCD.
A truly wonderful and admired friend.
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Please note that the Dell match will not reflect in your fundraising goal totals until they have been processed and sent to the charity.
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