The Endometriosis Foundation of America (EndoFound) was co-founded by Dr. Tamer Seckin and celebrity TV host Padma Lakshmi in 2009 in New York. Their aim was to overcome the huge disparity between the knowledge of endometriosis and its treatment.
EndoFound’s mission is to increase disease recognition, promote advocacy, enhance endometriosis treatment methods, and fund research. The organization lays emphasis on early diagnosis and intervention. It also focuses on ensuring disease education reaches both the public and healthcare professionals.
Origins of EndoFound
Dr. Seckin is a pioneer in the field of endometriosis with over 30 years of experience. He is an internationally renowned advanced laparoscopic surgeon.
Padma Lakshmi is the creator and host of the popular Hulu series Taste the Nation. She is an Emmy-nominated producer, food expert, and a New York Times bestselling author. Padma had to live with endometriosis for 23 years before getting a confirmed diagnosis in 2006. She was one of the first celebrities to raise awareness about endometriosis.
EndoFound has come a long way from its humble beginnings over a decade ago to bringing about a revolution in endometriosis awareness and legislation. Today, it continues to be the voice of many women whose agonies have been unheard and unrecognized.
Activities of EndoFound
EndoFound’s activities span the public and policymakers. The organization supports many advocacy initiatives to bring the attention of Congress to this debilitating disease.
Change in the law
The two-year advocacy initiative with the New York State in 2019 resulted in the first US law that made endometriosis and menstrual health literature accessible to school districts and healthcare professionals in the State. The organization is now pushing for a similar implementation in other states as well.
Endo EduKit
Although largely undiagnosed, endometriosis can occur in adolescents as well. EndoFound launched the Endo EduKit in 2016. The content was tailored according to the State University of New York’s Common Core Living Environment Standards. The Endo EduKit aims to increase disease awareness in adolescents, remove stigmas associated with menstruation and endometriosis, and promote treatment-seeking behavior.
The Congressional Educational Caucus
EndoFound worked with the bipartisan Congressional Educational Caucus (CEC) in 2020 to raise awareness about endometriosis. This resulted in a historic doubling of research funding to the National Institutes of Health (NIH). The amendment was possible due to the efforts of former Congresswoman Abby Finkenauer, who also had endometriosis herself since age 31.
The UpEndo Coalition
Recognizing the importance of dialogue between the public and policymakers, EndoFound launched the UpEndo Coalition in 2022. The UpEndo Coalition supports the CEC in its goals of advocacy and increasing funding through appropriations, policy changes, and White House engagement. The Coalition also works towards disseminating progress from White House initiatives, thought leaders, and other leading voices in women’s reproductive health.
Endometriosis CARE Act
EndoFound also worked on the 2022 Bipartisan Endometriosis CARE Act, which was recently introduced. This was supported by House Endometriosis Caucus and Representatives Lauren Underwood (IL-14), Nikema Williams (GA-05), Jenniffer González-Colón (PR-At Large), and Alma Adams (NC-12). The legislation would fund investments needed to advance endometriosis research and promote public awareness about the disease and its treatment.
Public initiatives of EndoFound
EndoFound provides a platform for the public to directly interact with clinicians, researchers, caregivers, and policymakers.
The UpEndo Citizen Advocacy Coalition Briefing
The UpEndo Citizen Advocacy Coalition Briefing in 2022 carried on from Congresswoman Abby Finkenauer’s work. It underscored the importance of citizen participation in motivating Congress. The briefing highlighted the importance of self-advocacy and the need to reach out to lawmakers proactively.
The Hill Day
The Hill Day event held in 2022 brought together researchers working in the field including EndoFound’s Scientific and Medical Director Dr. Dan Martin to discuss the importance of awareness and early diagnosis. Personal testimonials provided insights that broadened the understanding of the disease and stressed the importance of involving and sensitizing Congress on these aspects.
The Patient Day and Medical Conference
EndoFound also hosts an annual Patient Day where clinicians and researchers discuss key aspects of the disease directly with patients and caregivers. The Medical Symposium, which also occurs annually, brings together doctors and researchers from all over the world working in the field.
The Foundation presents the Harry Reich award during the symposium to recognize the contributions of healthcare professionals in advancing disease knowledge.
The Blossom Ball
EndoFound also hosts the annual Blossom Ball. This is a fund-raiser night to celebrate and recognize those who have worked very hard for disseminating endometriosis knowledge. The generated funds are used for advocacy, education, and research.
Research initiatives of EndoFound
One of EndoFound’s primary objectives is to advance endometriosis research to develop new diagnostic tools and treatment modalities. EndoFound’s Research Grants program has supported over $1 million in research initiatives.
EndoFound funding also helps researchers and young scientists to initiate their own projects. The organization funds a wide range of endometriosis research topics ranging from molecular and cellular processes to the social impacts of endometriosis.
The aim is to create a community of collaborative researchers who can advance knowledge of endometriosis holistically and create a positive impact on people’s lives. You can contribute to EndoFound’s research initiatives if you wish.
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Dr. Seckin is an endometriosis specialist and women’s reproductive health advocate. He has been in private practice for over 30 years at Lenox Hill Hospital with a team of highly skilled personnel.
Dr. Seckin specializes in advanced laparoscopic procedures and is recognized for his expertise in complex cases of deep infiltrating endometriosis of the pelvis. He is particularly dedicated to performing fertility-preserving surgeries on cases involving the ovaries.
He has developed patented surgical techniques, most notably the “Aqua Blue Excision” technique for a better visualization of endometriosis lesions. His surgical techniques are based on precision and microsurgery, emphasizing organ and fertility preservation, and adhesion and pain prevention.
Dr. Seckin is considered a pioneer and advocate in the field of endometriosis.