EndoActive was founded in September 2014 by mother and daughter Lesley & Syl Freedman and is an independent Not For Profit Health Promotion Charity. Syl was diagnosed with Endo at age 21 but suffered the symptoms from age 11.
EndoActive helps women and girls with Endometriosis by empowering them with knowledge and information. They 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.
We believe in empowering women and promote evidence-based research on Endo. For cultural reasons relating to menstruation, Endo has rarely been featured in public discourse or in the media. We recognise the need to break that silence and we’re using our skills in media and communications to do that. Getting Endo in the media A LOT has really helped raise the profile of Endo and is something we’re very proud of.
Our committee of nine 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 five 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.
Lesley offered to help – she thought that would be simple and probably take no more than a week. 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 is a need for community support, awareness, and information on this horrible, silent disease. And so we started EndoActive.
EndoActive aims to be an effective advocate at state and national level for women and girls with Endometriosis.
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 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 16 years, helping him find secure, affordable housing, justice after being assaulted, better health outcomes and improving his quality of life. She helped establish and was President of the ABC Child Care Centre at Gore Hill for 5 years. 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 and attended Birchgrove Public Primary and SCEGGS Darlinghurst. During her gap year she was employed as a Summer Camp Counsellor/ Specialist Soccer Coach at Camp Harlam, Pennsylvania, USA. Until her illness prevented her, she worked in hospitality while at uni, funding her backpacking through Europe, South East Asia, Mexico, Guatemala and Nicaragua. She completed a Bachelor of Communications in Social Inquiry at UTS with a sub-major in Media Studies and is completing a Masters in Health Communication at Sydney University. Throughout her secondary school and uni years Syl was plagued by various gynaecological disorders. Syl was diagnosed with Stage 4 Endometriosis in June, 2012. Since then she has had two laparoscopic surgeries – her second was in April, 2014. 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
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.
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.
Gretchen Carrigan – Statistician
Gretchen has Bachelors degrees in Science (statistics) and Economics and holds an MBA from INSEAD business school in France/Singapore. She has spent more than 8 years working on data and analytics projects that act as a catalyst for change. Her work has a strong emphasis on the people behind the data and has taken her into remote communities in Kenya, Indonesia, and Vietnam, as well as rural Australia. She has worked on projects spanning the science, agriculture, health and finance sectors. Gretchen has a particular interest in digital survey techniques and has worked with researchers from Harvard University to design and administer monitoring and evaluation surveys.