Patient Advocates Bios and Contact Information
Wendy Bingham, DPT - Extrapelvic Not Rare (501 c3)
wendybinghamdpt@extrapelvicnotrare.org
https://extrapelvicnotrare.org
Wendy is the founder of Extrapelvic Not Rare (EPNR). Her background as a healthcare practitioner and researcher, coupled with her disease experience and healthcare encounters led to the development of EPNR. The NPO’s mission is galvanized by the streaming voices of people with extrapelvic endometriosis. EPNR communicates with academic, research, clinical and public forums to progress awareness and knowledge about extrapelvic disease. EPNR works to positively impact clinical competence and ability of people who have or suspect presence of extrapelvic endometriosis to advocacy for themself (or another). EPNR was a recent Capstone Project host-site for University of the Pacific, Doctor of Occupational Therapy Program and publisher of The ABCs of Extrapelvic Endometriosis (2024). She presented topics on bowel and thoracic endometriosis @ The Endometriosis Summit (2022, 2024) and a Keynote Speaker @ The Endometriosis Association of Iceland attended by the Minister of Health and Members of Parliament (2022).
Katie Boyce, BCPA - Endo Girls Blog
Instagram: @endogirlsblog
Katie is a board-certified patient advocate and consulting chemist with a B.S. in Biochemistry. Her social media efforts empower and educate individuals impacted by Endometriosis and breaks down myths, complex scientific topics, up-to-date research within the Endometriosis community. She also consults with key opinion leaders, researchers, and surgeons to ensure the patient's perspective is present.
Shannon Cohn, JD - EndoWhat?
Shannon Cohn is a filmmaker, lawyer and social impact producer. Her films and TV series have aired on PBS, Nat Geo, Discovery Channel, Amazon and Netflix. Shannon's films are catalyzing tools for large-scale social impact plans aimed to create meaningful change. This includes federal policy changes, medical education initiatives and large-scale public awareness campaigns. Below the Belt, her new PBS documentary executive produced by Secretary Hillary Rodham Clinton, Senator Orrin Hatch and Rosario Dawson shines a light on women's health inequities through the lens of endometriosis. Below the Belt has hosted public screenings across 6 continents with strategic partners like the WEF and UNFPA, at over 20 US medical schools, at the NIH’s 27 Institutes for its 20,000+ employees and on Capitol Hill for members of Congress in a bi-partisan event co-hosted by Senator Elizabeth Warren and Senator Mitt Romney. Her previous film, Endo What?, was called “the first step in a plan for change in endometriosis” by Newsweek. Before Shannon was a filmmaker, she practiced international law and was part of the team that prosecuted Enron Corp. in the largest white collar crime investigation in FBI history.
Heather Guidone, BCPA - Center for Endometriosis Care
heather@centerforendo.com
https://centerforendo.com/
Heather Guidone, BCPA is the Surgical Program Director of the Center for Endometriosis Care (CEC). As a Board-Certified professional health advocate, she has focused on 'bench to beltway to bedside' efforts in disease education, advocacy, research, legislation and policy reform, patient-centered care and more for over thirty years, but also has a deeply lived experience with advanced endometriosis.
Lj Johnson. PsyD - Wholistic Hormone Expert
Instagram: https://www.instagram.com/wholistic.hormone.expert/
https://wholistichormoneexpert.com/
Dr. Lj Johnson is a dedicated advocate for women’s health and hormones while specializing in endometriosis, PCOS, and fibroids. With a wholistic and functional approach, she empowers women to thrive despite chronic invisible illnesses. Dr. Johnson believes in providing compassionate care, guiding her patients from diagnosis to developing personalized, multidisciplinary healthcare plans.
Her journey is rooted in personal experience; after enduring a 16-year struggle to receive a proper diagnosis for endometriosis, she is driven to ensure that no woman feels alone in her healthcare journey. Dr. Johnson emphasizes individualized care, focusing on education and support for both patients and their families.
She holds a Doctorate in Psychology from the University of Denver and a Doctorate of Osteopathic Medicine from Rocky Vista University. Additionally, her extensive training includes certifications as a Functional Diagnostic Nutrition Practitioner and in Corrective Holistic Exercise Kinesiology, along with multiple credentials from the American Council on Exercise.
Dr. Johnson’s commitment to women’s health is not just professional; it is deeply personal. She aims to transform the healthcare experience by providing high-quality, empathetic care tailored to each woman's unique needs.
Denie Shae Martinez – Giving Tree Essentials
https://www.givingtreeessentials.com/
Denie Shae Martinez knows firsthand how isolating, disempowering, and exhausting life with endometriosis can be. By sharing her experiences, she hopes to illuminate the realities of living with endometriosis, guide healthcare professionals to become patient centered, and empower patients to advocate for themselves. With certifications in Ayurveda, iRest®, Yoga, Massage Therapy and Aromatic Botanical Medicine, along with a deep respect and curiosity for Somatics and Polyvagal Theory, she empowers others to reclaim their sense of self, dignity, and wellbeing through sharing resources and support that build resiliency and enhance one’s quality of life.
Nancy Petersen - Nancy’s Nook
Nancy is co-founder of the first laparoscopic surgery program for the complete excision of endometriosis with Dr. David Redwine. With the help of the Endometriosis Research Center, she established a Facebook education/advocacy group now approaching 220,000 international members. Our advocacy work is found on Facebook at Nancy's Nook Endometriosis Education.
Rosemarie Phillip, MSODL, PCC - a life well-loved
www.rosemariephilip.com
https://www.alifewell-loved.org/p/endometriosis-one-step-at-a-time
Rosemarie founded a life well-loved, a disabled-led platform empowering people to nurture their well-being. Navigating systems rooted in ableism led to 13 years of delay and misdiagnosis, shame, fear and isolation. She recently partnered with advocate Katie Boyce Donahue to launch a free, easy to navigate, 120 lesson course on endometriosis.
Sallie Sarrel – The Endometriosis Summit
http://www.theendometriosissummit.com
Facebook, Instagram, TikTok or Youtube: @endometriosissummit
Dr. Sallie Sarrel is a pelvic physical therapist and a person with endometriosis. She is a pioneer in the field of pelvic physical therapy and endometriosis specializing in endometriosis and its many drivers of pain. Together with Dr. Andrea Vidali she founded The Endometriosis Summit, an educational entity to drive endometriosis forward for patients, surgeons, practitioners and caregivers. The 2025 Endometriosis Summit will be held in person in Orlando, Florida and Virtually Worldwide March 28-30, 2025.
Heidi Yule - Endometriosis UK
heidi@endometriosis-uk.org
https://www.endometriosis-uk.org/
Heidi is Director of Development at Endometriosis UK.