Recently, I had the pleasure of meeting Jodie Dunne, Co-Founder of the newly established Endometriosis Australia.
We’d been in contact over email and social media for many months but had not had the opportunity meet in person.
Over our first coffee together, I heard first-hand about Jodie’s personal battle with Endometriosis and why she and fellow Co-Founder Donna have created this flourishing charity here in Australia.
What is Endometriosis Australia and how did it start?
Endometriosis Australia (or EA as we affectionately call it) is focused on increasing the recognition of endometriosis in Australia; providing endometriosis education programs; and helping to fund ongoing endometriosis research.
EA wants to build strong relationships with existing support networks throughout Australia and the world.
EA received its charity status in March 2013 and was rounded because Australia didn’t have an organisation like those that exist overseas in countries like New Zealand, the USA and UK. Australia had small support groups and other women’s health organisations, but nothing with the sole focus of raising awareness, educating and funding research into this disease.
It was a gap that needed to be filled.
The story of how you met your Co-Founder, Donna, is interesting, tell us more about it.
Donna and I met on Facebook through a post I made on my art page.
We got talking on email and decided we both shared the same passion for creating an organisation such as Endometriosis Australia. We began the long road to registering a charity and EA was born.
Donna and I have only met twice face to face, we have built EA using phone, email, Facebook and Skype. It’s the perfect example of how ‘global’ we’ve become and that location is no boundary. A shared passion/commitment and access to technology is all you need.
The first time we met face to face was the weekend before our first board meeting when I stayed with Donna and her family so we could prepare.
Our other two Directors have a personal interest in Endometriosis be it through work or family.
What is your goal with Endometriosis Australia?
My personal goal in creating endometriosis is to decrease the length of time that it takes women to get a correct diagnosis.
It currently stands at seven to 10 years on average.
In reducing the time it takes to get a diagnosis the damage that this disease does can be reduced. I cannot change the damage that endometriosis has done to my body, I can’t change my story but I can work to make a positive change for girls and women in the future, I can change someone else’s story.
At an organisational level, our goals are to:
If you could tell people anything about this disease, what would you tell them?
It is not just a reproductive disease; it is not just about infertility or a bad period. It has a much wider impact, personally, physically, emotionally/mentally and financially.
It is more common than you think; one in 10 women suffer from endometriosis and symptoms can start with the first period.
The symptoms of endometriosis do not necessarily correlate with the extent of the disease.
What are the biggest frustrations facing Endometriosis Australia at the moment?
Working out how to market the disease, endometriosis.
It sounds cold but in the charity market with such well-established brands (look at how much awareness has been achieved around breast cancer), working out how to market a disease such as endometriosis is a challenge.
Another challenge is getting funding to develop and run our programs. Also engaging and getting people involved, without help we cannot grow to do what we want to do.
How can people help Endometriosis Australia?
Participating in events we have organised, sponsoring people/events that are involved, and donating.
Keep an eye out for when we call for volunteers, even send us an email if you think you have a skill set you think we could use as a volunteer.
Share posts and blogs through social media to show your support.
Get involved. Talk about EA, talk about endometriosis.
Businesses can get involved by sponsoring events, such as our major events in Endometriosis awareness month March 2014. They can sponsor running shirts for event participants. They can be supporting partners in awareness or education programs, they can sponsor research programs in the future as well.
What have you learned from this experience of founding your own charity?
I have learnt that it is not an easy process to start a charity. I have learnt in order to succeed we need to harness strengths and not focus on weaknesses.
I have learnt about the importance of leadership in the process. I have learnt the importance of empowering women to be leaders of their own health through education.
I have learnt that there is a large amount of misinformation out there about endometriosis and that needs to change. I have learnt that it is hard to get people and businesses involved financially.
I have learnt that I am stronger that I ever realised.
I have learnt what I am passionate about this and that when you find that thing you are passionate about it is not a chore and that idea really isn’t a myth or marketing line.
I have learnt how to ask for help, that it is ok to do so and that some people are incredibly generous.
So much more than period pain, endometriosis is something that most likely affects someone you know.
Let’s start talking about it, ladies. We can’t afford not to.