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SEE THE FULL SPEECH BELOW in another comment——— It was an important gathering, attended by both Health Minister Greg Hunt and Shadow Minister Chris Bowen, as well as a number of other MPs who are in the Parliamentary Friends of Endometriosis. We were there as founding members of ACE, the Australian Coalition for Endometriosis. The gathering acknowledged the progress made since the announcement of the National Action Plan but EndoActive’s role was to remind them that this is just the foundation and that more funds must be made available for education for school age girls, national awareness campaigns and upgrading education for medical professionals so that we can achieve earlier intervention. While a lot has been achieved, this is only the beginning.

Fantastic Rod Freedman and take care of yourself Syl 🤗🎉

Good on you Rod!

Great work Rod #Mendo

So pleased you were able to step in - great photo! Get better soon Syl darling 🙏💖🙆🏻‍♀️

Rod we loved your speech last night . 👏👏

Well done Rod and a big thanks to you!

Absolutely fabulous. Great photo too.

👏

Great job Rod! 🙂

Thankyou for spreading the word. I was first diagnosed 41 years ago when hardly anyone had heard of this disease. Now it is epidemic. My theory is women's bodies are reacting to toxins in our environment. Please help ease the suffering of these women. It is dreadfully painful and debilitating.

Excellent Rod, great speech too

Great photo 💙

Excellent news

Well done to an awesome team!

Well done Freedman family!

Emily Street👏👏

Erin Palmer

SPEECH TO Parliamentary Friends of Endometriosis event, 26 November 2019-11-25 - The Hon Greg Hunt, Minister for Health - The Honourable Chris Bowen, Shadow Minister for Health - Parliamentary Friends of Endometriosis, and especially - The Hon Nicolle Flint & The Hon Lisa Chesters - and Members of ACE, the Australian Coalition for Endometriosis My name is Rod Freedman. I’m one of the founding members of EndoActive, along with Lesley and our daughter, Sylvia. I’m standing in for Syl today, because she was unable to travel to Canberra due to a flare up of severe pain, one of the many debilitating symptoms of endo. Of course, she wanted to be here and to celebrate with you all the significant achievements that collectively, we have made since the National Action Plan for Endometriosis was launched last year. But Endo got in the way. As many of you know, Endo is a malevolent, cruel and random companion that disrupts your daily plans and often, your education, your career path and sometimes, your dreams for the future. So Syl and Lesley send their best wishes. EndoActive is a health promotion charity and an advocacy group. We started just 5 years ago and represent the interests of women and girls living with Endometriosis through Advocacy, Awareness and Information. When my daughter, Syl was diagnosed some 8 years ago, there was literally no Information available to us. No brochures to tell us the basics about Endo, no peak body to consult, just a handful of determined and under- resourced consumer groups. We gradually became aware of how extensive this chronic disease is : 1 in 10 or possibly 1 in 9 women in Australia have Endo. It’s common to wait 7-10 years to be reliably diagnosed. And yet there was so little Information available. About 4 years ago, Syl was studying for a Masters in Health Communication. She had an idea for a paper – An Analysis of the Portrayal of Endo in the Media but after researching for a week on the subject her Lecturer told her ‘There’s not enough media on the subject to write a meaningful paper.’ . Around the same time, 4 years ago, I looked up ‘Endometriosis’ on the Department of Health’s website. There were two mentions of it – both the same just a basic definition of the disease. That was it. We were surprised and disappointed. Search the website today and the first things you’ll find are references to the National Action Plan for Endometriosis, launched last year. There’s an Endometriosis Advisory Group – consumers, researchers, medical people and EndoActive is represented This is significant progress in Awareness. We were here in Parliament in December 2017 when Minister Hunt announced that there would be a NATIONAL ACTION PLAN. That was an unexpected, exciting and emotional moment for us, with the ground having been tenaciously prepared by the bipartisan Parliamentary Friends of Endometriosis, thanks to Nicolle Flint, Gai Brodtmann and Nola Marino. That day also, Greg Hunt apologised for the way that the disease and the women who live every day with it, had been virtually ignored by the health system and to a large extent, by the health professionals community. That was a massive turning point and one which we, the families affected by Endo, deeply appreciate. Having this National Action Plan is a huge step in validating the experiences of women, their partners and their families. As the father of a young woman living and battling with Endo, I can vouch for the suffering caused not just by the disease, but also from the isolation, confusion and frustration that comes from not being believed – being refused medication by a doctor or at a hospital because they think you’re a ‘drug seeker’ or a ‘doctor shopper’. Or being misinformed by health professionals who you desperately want to trust – ‘just go and have a baby, it'll cure your endo’ or – ‘after you have a hysterectomy, the endo will be gone – neither of these are true but these myths are still being perpetrated today. At EndoActive we know this, because many of our 14,000 followers on whose behalf we advocate, have told us. And that is why Awareness and education campaigns that reach out way beyond our own Endo- activist communities to reach the general public and health professionals are so vital. So what has happened since the launch of the National Action Plan for Endo? I speak here only from EndoActive’s perspective. Prior to the Plan, EndoActive held two conferences called Shared Perspectiveson Endometriosis and we recorded the proceedings on video. In order to recoup our costs, we had to charge for the videos. Thanks to the National Action Plan, we are soon to be the recipient of a grant from the Dept of Health. These fundswill enable us to distribute the videos free of charge, reaching both health consumers and health professionals in the range of organisations listed in the Plan. (We’ve not yet actually received any funds, but are assured that we will be getting them in the New Year.) This will be our first funding ever and we sincerely appreciate it. Endo has been hidden for way too long. Try googling ‘Endometriosis’. Just 5 years ago, there was barely a mention in the press or on TV. It’s a vastly different story now. If Syl wanted to write her paper on the Portrayal of Endo in the Media today, there’d be plenty of material. In fact, she features in many of the articles ! We no longer feel so ignored and alone. This year, EndoActive published a report in association with Ernst Young. The Cost of Endometriosis in Australia. It took the best part of two and half years to complete - with no funding – it was produced pro bono. The report estimates –very conservatively – that Endo costs the Australian economy $7.4 billion a year. It’s likely closer to $9.5 billion because many of the statistics on which this report is based, don’t exist. The data hasn’t been collected. That’s another reason why more funds for Research are needed. Early intervention, better informed treatment, better trained doctors and greater public awareness starting from school aged girls, will all make a difference. They’ll also cost money. But investing in health promotion will save million in the future. EndoActive applauds the Federal government for its initial response to the calls from the community for recognition, for action and for funds. We are also enormously appreciative of the passionate work of The Parliamentary Friends of Endometriosis for their determination in bringing this issue to the attention of the parliament and from here, to the Australian community We see the National Action Plan as a very impressive foundation. But a foundation needs a structure above it and therefore ongoing commitment of funds to build it, to maintain it and to expand it. We know about the desperate need. We know about the cost of not doing enough. We look forward to hearing about more funding and a truly national awareness program, based on the National Action Plan. Much has been achieved. There is much more to be done. -Rod Freedman

You're a star Rod