About Us

EndoActive’s mission is Awareness, Information and Advocacy for women and girls living with Endometriosis (Endo). We aim to promote early intervention and more informed treatment of Endo, a disease affecting 1 in 10 women – 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 women 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.

Our History

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.

Achievements

In less than five 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 was born in Sydney in 1991. She 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 blogs about her experiences at sylfreedman.com

  • 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

Karin Eurell

Karin has a Bachelors Degree in Accounting and Finance, an Executive MBA from the AGSM and is a Member of the Australian Institute of Company Directors.  She has a background in international banking and finance including senior level roles in business strategy and risk management. Karin established DocTours Voluntary International Programs in 2012 to help medical professionals undertake short term voluntary work in developing countries.  Her experience in the not-for-profit sector includes directorships of the AMOS Fund, Rotary Club of Northbridge and is the Treasurer of Sailability Middle Harbour.

Rod Freedman

Rod  is an independent director and producer whose documentaries have won many Australian and international awards and screened in dozens of film festivals. Rod and his partner, Lesley run Change Focus Media producing television documentaries, educational and informational videos for clients in health, education, university, industry and the arts. They have produced and directed a variety of programs on rural and remote area health issues, especially focusing on Aboriginal and Torres Strait Islander health initiatives. He was a board member of the Community Child Care Co-op and is a committee member of OzDox – the Australian Documentary Forum, promoting documentary filmmaking and associated issues.  He hosts events for the Sherman Centre for Culture and Ideas and produces their podcasts. Rod’s most recent film as producer is the multi-award winning documentary, Once My Mother.

James Prasad

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 Little

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.

Gillian Walker

Gillian and her husband Claude initiated an Endo support group in Mt Eliza, Victoria, motivated by their daughter’s sixteen year struggle with Endo. Gillian brings a broad range of experience in the health, business and community sectors to EndoActive, having worked as a registered nurse, midwife, educator, businesswoman and enthusiastic volunteer for a range of organisations. Currently the owner/director of an event management company, Gillian has owned and run a craft shop and a dressmaking and children’s clothing business. She has been an educator in Hospitality, planning and implementing a wide variety of programs, including specialised courses for the Australian Defence Force and students with disabilities.

Cassie Winter

Cassie has 20 years of experience in business and health. She holds a Diploma of Nursing, a Business Administration Management Diploma, and a Bachelor of Nutrition. Most recently, Cassie worked as a Nutrition Program Advisor for OzHarvest as she cares deeply about finding a solution to food insecurity in Australia. She has participated in panel discussions, authored articles, delivered guest lectures and sat on expert working groups. She is studying for a Master of Public Health at the University of Sydney. Cassie has stage four Endometriosis and knows only too well the challenges and issues women face when managing a complex, chronic pain condition. This motivated her to advocate for better care, better solutions and better understanding, so it becomes easier for women to navigate and manage this disease with confidence and dignity.