EndoActive’s mission is Awareness, Information and Advocacy for women, girls and people assigned female at birth with Endometriosis (Endo). We aim to promote early intervention and more informed treatment of Endo, a disease affecting 1 in 10 women and girls – around 600,000 – and costing the Australian economy $7.4 billion annually.
We’re an independent, Not For Profit Health Promotion Charity, founded in September 2014 by mother and daughter Lesley & Syl Freedman. Lesley and Syl are passionate about gathering evidence-based research so that people with Endo and their families don’t have to experience the lack of information they faced when Syl was first diagnosed at 21, having suffered symptoms from age 11.
For cultural reasons relating to menstruation, Endo was rarely featured in public discourse or in the media, until recently. We’re proud to have helped break that silence by raising the profile of Endo in the media and through our two groundbreaking conferences on Endo.
Our committee includes nurses, a company director, a pathologist, a teacher, a statistician, two documentary filmmakers & women with Endo.
In May 2014, Lesley decided to find out more about the cutting edge of Endometriosis research and treatment. She obtained a list of Australian doctors, scientists, and educators who attended the 13th World Congress of Endometriosis in Sao Paulo. Several generously shared their experience of the Congress and their knowledge of Endo.
As Syl lay on the couch in agony from her recent surgery, Lesley refilled her hot water bottles and read the abstracts: 400 pages of medical and scientific research, and reports on Endo from all over the world. Several papers were on Dienogest, marketed as Visanne – this drug was getting good reviews overseas and she wondered if it was available in Australia.
She began calling Bayer Pharmaceuticals to ask: is it available, and if not, why not? It took weeks for them to respond. In the meantime, Sylvia and Lesley travelled to the Endometriosis Clinic in Canberra Hospital and spent a few precious hours with Melissa Parker RN. Melissa mentioned that she knew some gynaecologists who would love to have Dienogast (Visanne) as part of their repertoire of treatments for Endo.
In August 2014, Lesley mounted a petition on Change.org. Syl gathered the courage to describe publicly her experience of life with Endo. Within 6 weeks, we had 74,500 signatures and 19,000 comments.Bayer said Yes and Visanne was released to Australia in March 2015.
Most comments were from people who either suffer from Endo, or are directly related to them. Their heartfelt pleas for help made it very clear there is a need for something more than a drug: there’s a need for community support, awareness, and information on this horrible, silent disease. And so we started EndoActive.
Over 8 years, EndoActive has improved patient outcomes by :
- Convening two ‘Shared Perspectives on Endometriosis’ conferences
- Producing award winning educational video resources.
- Generating national publicity and raising awareness
- Successfully lobbying government for recognition and funding
- Commissioning ‘The Cost of Endometriosis in Australia’ Report from Ernst Young
- Promoting early intervention
- Building relationships with researchers and health care professionals to expand research
- Being a foundation member of ACE, the Australian Coalition for Endometriosis
EndoActive’s activities and communication strategy has resonated strongly with women whose pain has been dismissed, symptoms overlooked and disease under-diagnosed for years. Endo is no longer a hidden disease. Much has been achieved. Much more needs to be done.
Recognition and Awards
– NGO of the Year Winner, Prime Awards 2019
– Sustained Excellence in Bettering Patient Outcomes, Finalist, Prime Awards 2019
– NGO of the Year Finalist, Prime Awards 2018
– Cosmo Women of the Year Awards Finalist, Game Changer of the Year 2018
– 100 Women of Influence, Young Leader Award 2016
– Best Public Health Initiative, Highly Commended – Prime Awards 2016
– International Womens Day Honour Roll, Leichhardt Council 2015
– Cosmo Women of the Year Awards Finalist, Game Changer of the Year 2015
Lesley Freedman, Co-founder
Lesley has an MA in Writing for Media and a Post Grad Diploma in Social Health. She has worked in the media since leaving school in NZ. She was a single parent for 7 years after the birth of her first child. She was a Director at ABC TV in Sydney for 12 years. She helped establish and was President of the ABCTV Child Care Centre for 5 years, before becoming Co-Director of Change Focus Media with her partner Rod. CFM is an independent production company that produces health and education video resources and documentaries. Lesley has been a voluntary Advocate for an intellectually and mentally disabled person for the last 18 years, helping him find secure, affordable housing, justice after being assaulted, better health outcomes and improving his quality of life. Lesley is passionate about social justice, equal opportunity and equal pay for women and improving the lives of women and girls with Endo.
Syl Freedman, Co-founder
Syl has a Bachelor of Communications in Social Inquiry from UTS and a Masters in Health Communication from the University of Sydney. Throughout her high school and uni years, Syl was plagued by various gynaecological disorders. She was diagnosed with Stage 4 Endometriosis in June, 2012. Since then she has had two laparoscopic surgeries. At age 23, she chose ovarian stimulation and egg freezing as a possible insurance against potential infertility. Syl has been recognised widely for her passionate advocacy on behalf of women and girls with Endo:
- Cosmopolitan Women of the Year Finalist, Game Changer of the Year 2018
- 100 Women of Influence, Young Leader Award 2016
- International Womens Day Honour Roll, Leichhardt Council 2015
- Cosmopolitan Women of the Year Awards Finalist, Game Changer of the Year 2015
James has a Bachelors Degree in Science and a Diploma in Laboratory Testing. He studied at the University of Western Sydney whilst working at Medlab Pathology in the Biochemistry and Endocrinology Department. James now looks after the laboratory’s toxicology department. James and his wife, Hitesha both worked and studied together at the same institutions. Early in their marriage, Hitesha was diagnosed with Endometriosis after suffering from a miscarriage. The pain that she endured during her periods made James feel lost and helpless. With their medical scientist backgrounds, they were both really shocked at how little the general public and even medical professionals understood about Endometriosis. They resorted to their own trial and error methods. Seeing Syl and Lesley on The Project in 2014 gave both James and Hitesha the courage to speak up about the problems they faced to their family and friends. James is passionate about raising awareness in ethnic groups where female gynaecological problems are not discussed openly.
Amanda qualified as a Registered Nurse and expanded her experience to encompass aspects of health education and communication. She was Deputy CEO and Manager Education for five years of the Canberra based Rural Health Education Foundation. In this role, Amanda raising funds for, planned and produced satellite broadcast and online resources for rural and remote area health practitioners. She moved to become Managing Director of the Minerva Group, which specializes in health and safety before joining the Department of Immigration and Border Protection as Director Health Capability and Scrutiny.
Hitesha has a Master of Science, Bachelor of Medical Science and Diploma in Laboratory Technology. After working as a diagnostic laboratory Scientist in Microbiology and Haematology for private pathology laboratories, she was an Academic Teacher with Western Sydney University. She is a qualified Trainer and Assessor and is currently working within the Education team at Siemens Healthcare.
She comes from a cultural background where women’s health issues are not discussed openly. After suffering in silence for a few years with Endometriosis, she and her husband James got the courage to speak to their friends and family about the debilitating condition. They owe their courage to EndoActive’s Syl and Lesley, who spoke about Endometriosis on the Project in 2014. After seeing that segment, Hitesha realised that she is “not alone”, her “pain is real” and there is someone else in this world who “understands what she is going through”. Since then, the couple have made it a purpose to discuss Endometriosis and other women’s health issues to their friends and family and in doing so, managed to help many towards an early diagnosis and management.
Her own personal battle with Endometriosis has developed into a passionate interest in raising awareness about women’s health issues especially in multiculturally diverse communities. She is fluent in English, Hindi and Punjabi and willing to give a listening ear to anyone suffering in silence.
Kelly has a background in psychology and restorative justice from Queen’s University, Canada. She was accepted to the University of Sydney in 2021 to study nursing but unfortunately had to defer her studies due to surgery and other commitments for her endometriosis. Kelly has been managing chronic pain and migraines since her early twenties and was diagnosed with Stage 4 Endometriosis in December 2022. She is currently managing her endometriosis with a combination of Western and alternative medicine. As part of her recovery journey, Kelly is passionate about spreading awareness and having a chat with anyone, so that they do not feel alone.