irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $238KCONFERENCES AND WEBINARS: HISTORICALLY ENDOFOUND RUNS TWO LARGE ANNUAL CONFERENCES. THE FIRST IS A MEDICAL CONFERENCE WHICH GATHERS PHYSICIANS, SURGEONS, RESEARCHERS, NURSES, FROM ALL OVER THE WORLD TO LEARN ABOUT CURRENT TRENDS AND BEST PRACTICES FOR THE TREATMENT OF ENDOMETRIOSIS. THE SECOND IS A PATIENT CONFERENCE BRINGING PATIENTS AND PHYSICIANS TOGETHER TO LEARN IN DEPTH ABOUT ENDOMETRIOSIS, MANAGEMENT OF THE DISEASE, SUPPORT AVAILABLE AND WELLNESS TRAINING.
- #2 $85KRESEARCH AND GRANTS - ENDOFOUND FUNDS CUTTING-EDGE MEDICAL RESEARCH AT MEDICAL INSTITUTIONS AND HOSPITALS IN THE US PREDOMINANTLY, AND IN OTHER COUNTRIES. RESEARCH IS CONDUCTED ON THE ETIOLOGY OF THE DISEASE, GENETIC IMPLICATIONS, AND ORGANS AFFECTED BY THE DISEASE, AMONG OTHERS, ALL WITH THE GOAL OF DEVELOPING BETTER DIAGNOSTICS AND BETTER TREATMENTS.
named programs · 4 · from sources
What they call their work
Endometriosis Resource Portal for People of Color
Online platform providing culturally relevant information, patient stories, and resources to address racial disparities in endometriosis diagnosis and care for BIPOC individuals.
Medical & Patient Conferences
Annual conferences held during Endometriosis Awareness Month that bring together physicians, surgeons, researchers, and patients to share knowledge on best practices, disease management, and wellness. Transitioned to virtual webinars during the pandemic.
Patient Advocacy & Education Initiative
Provides educational materials, symptom guides, and doctor discussion tools to help patients—especially women of color—advocate for themselves in medical settings.
Research and Grants Program
Funds cutting-edge medical research on the etiology, genetics, and organ impact of endometriosis at institutions in the U.S. and other countries, aiming to improve diagnostics and treatments.
activities · 5 groups
What they do
-
Reproductive Health Advocacy & Education 5 activities
- Advocate for endometriosis awareness and policy changeAdvocates for increased investment in endometriosis research and policy action through public campaigns, congressional engagement, and coalition-building. Successfully advocated for New York state legislation requiring distribution of menstrual health and endometriosis education materials and partnered with the Congressional Endometriosis Caucus to double federal research funding at NIH.
- Conduct community outreach and public education eventsEngages communities through informational tables, workshops, and outreach events in public spaces to deliver evidence-based endometriosis education. Provides trusted educational content on endometriosis and menstrual health to patients, families, caregivers, advocates, and healthcare professionals.
- Deliver endometriosis and menstrual health education to youthProvides age-appropriate endometriosis and menstrual health education to adolescents in grades 9–12 through the ENPOWR Project, delivering in-school and community-based programs nationwide since 2013. Offers flexible educational materials for middle schools, high schools, colleges, and youth-serving organizations, including free digital and print resources such as posters, pamphlets, and symptom guides.
- Facilitate clinical training and professional educationProvides expert surgical training for endometriosis care and offers educational programs for clinicians, scientists, and healthcare professionals on recent scientific advancements. Supplies training tools for school nurses, educators, coaches, and counselors to support students’ menstrual health.
- Operate digital education platforms and resource portalsOperates a digital education platform offering expert interviews, patient stories, medical research updates, and educational videos on endometriosis symptoms, diagnosis, treatment, surgery, fertility, and pelvic pain. Maintains an Endometriosis Resource Portal for People of Color with symptom guides, doctor discussion tools, research on racial disparities, and personal stories to improve representation and access to care.
-
-
Biomedical Research and Innovation 2 activities
- Conduct and disseminate scientific research on endometriosisConducts and presents peer-reviewed scientific research on endometriosis, including proposing a descriptive classification system based on anatomical location and curating research on racial and ethnic disparities in care. Shares current scientific data and articles to advance understanding of the disease.
- Support patient participation in clinical researchShares information on actively enrolling national clinical studies to facilitate patient enrollment and participation in endometriosis research.
-
-
Medical Research Funding 1 activity
- Fund endometriosis research through grantsFunds medical research at institutions in the U.S. and abroad focused on the etiology, genetics, and organ systems affected by endometriosis to improve diagnostics and treatments. Has awarded over $1 million in research grants to support seed projects and young investigators, some of which have led to larger NIH-backed studies.
-
-
Disease-Specific Clinical & Patient Education 1 activity
- Host medical and patient educational conferences and webinarsHosts annual medical and patient conferences to educate healthcare professionals and patients on endometriosis treatment, disease management, and wellness. Transitioned to online webinars and virtual conferences in 2021 to maintain programming during public health restrictions.
-
-
Charity Event Organization 1 activity
- Participate in public awareness campaigns and eventsEngages in public awareness initiatives such as serving as an official charity partner of the TCS New York City Marathon for ten consecutive years to promote endometriosis visibility and fundraising.
-
financials · form 990 · fy2024
revenue
Total revenue$1.93M
Contributions & grants$1.90M98%
Program service revenue$00%
Investment income$35K2%
Other revenue$0
expenses
Total expenses$1.78M
Program expenses82%
Admin / overhead8%
Fundraising10%
Salaries & benefits$417K
Grants paid out$75K
Largest expense lineProfessional Fees
balance sheet
Total assets$2.84M
Cash$504K
Investments$2.08M
Liabilities$63K
Net assets$2.77M
Liquid reserves17.4 mo
5 years on record · 2020–2024 · YoY revenue +1.3%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 2
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| CAROLYN MAYER | SENIOR PROGRAM MANAGER | 40 | $138K |
| CAROLYNN RICCI | CHIEF DEVELOPMENT OFFICER | 40 | $112K |
board members · 9
- ELIF SECKIN — TREASURER
- HARRY REICH MD — DIRECTOR
- KARLI GOLDSTEIN DO — DIRECTOR (THROUGH 6/24)
- KRISTY CURRY — DIRECTOR
- LAWRENCE LIVORNESE — DIRECTOR
- MADELEINE K RUDIN — DIRECTOR
- MICHAEL S BRODHERSON MD — DIRECTOR (THROUGH 5/24)
- PIRAYE YURTTAS BEIM PHD — DIRECTOR
- TAMER SECKIN MD — PRESIDENT
relationships · 13
Who they work with
- Abby Finkenauer Partner — Former Congresswoman and EndoFound Ambassador who participated in the Virtual UpEndo Citizen Advocacy Coalition Briefing.
- American Society of Reproductive Medicine Network — References and builds upon ASRM's staging system for endometriosis.
- Congressional Endometriosis Caucus Partner — Collaborated with EndoFound to raise awareness and secure increased NIH funding for endometriosis research.
- Diana Falzone Partner — EndoTV host and EndoFound Ambassador who participated in the Virtual UpEndo Citizen Advocacy Coalition Briefing.
- Dr. Soyini Hawkins Partner — Featured minimally invasive gynecology surgeon and endometriosis patient who contributes educational videos to the resource portal.
- EndoNews.com Partner — Platform used to disseminate recent scientific advancements in endometriosis to clinicians, scientists, and patients.
- NIH Government — Recipient of federally funded research projects that were initially supported by EndoFound seed grants.
- Seckin Endometriosis Center Partner — Collaborates on educational content about endometriosis definition, stages, symptoms, causes, diagnosis, and treatment.
- Seckin Endometriosis Research Center Partner — Collaborates as a research hub integrating patient advocacy, research, and education to advance endometriosis care.
- Sierra Canyon School Partner — Hosted an ENPOWR educational assembly with support from EndoFound Ambassador Corinne Foxx.
- TCS New York City Marathon Partner — Official charity partner of the Endometriosis Foundation of America for awareness and fundraising.
- Tamer Seckin Partner — Collaborates with Dr. Tamer Seckin to provide expert medical information on endometriomas and ovarian cysts.
- medical institutions and hospitals in the US and other countries Partner — Receives grant funding from EndoFound to conduct endometriosis research.
strategies · 5
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Advocacy-Driven Systemic Changemethodology: targeted_legislative_advocacyBy aligning public education campaigns with awareness months and targeting legislative advocacy to key health policy committees, the organization amplifies impact, because strategic timing and focused policy engagement increase public visibility and create leverage for structural improvements in research funding and clinical care.
- Clinical Standard Advocacymethodology: deep-excision_surgeryBy advocating for complete laparoscopic excision surgery and anatomical classification of endometriosis, the organization improves treatment efficacy and symptom management, because precise surgical removal and patient-centered staging lead to reduced recurrence and better alignment between diagnosis and lived experience.
- Education-First Early Awarenessmethodology: youth-centered_educationBy delivering age-appropriate, evidence-based endometriosis and menstrual health education in schools and communities, the organization promotes early symptom recognition and care-seeking, because early diagnosis leads to better long-term health outcomes and reduces systemic delays in treatment.
- Patient Empowerment Through Knowledge and Representationmethodology: patient_empowerment_through_educationBy equipping patients and supportive adults with accessible medical knowledge, shared language, and representative stories—especially from BIPOC individuals—the organization improves care access and outcomes, because empowered patients are better able to navigate fragmented healthcare systems and advocate for accurate diagnosis and treatment.
- Research Catalysis and Scientific Validationmethodology: seed_funding_catalystBy providing seed funding for early-stage research and prioritizing high-impact studies, the organization advances scientific understanding of endometriosis and catalyzes larger federal investments, because early financial support enables hypothesis validation and builds research capacity in an underfunded field.