On 9th of April 2019 I received an email that would allow me to advocate for epilepsy on an international scale with it I can help epilepsy get the respect it deserves and hopefully people living with it accepted not judged.
The email was from Ann Little who is the Executive Director of the International Bureau of Epilepsy, congratulating me on my success of overcoming my own personal journey with epilepsy, as well as the many voluntary hours I have put into helping others right across Australia going along the same at times a very confronting epilepsy journey.
The email stated that for the first time International Bureau of Epilepsy would be acknowledging 8 recipients from each of the their World Regions. These acknowledgements would be named the Golden Light Awards to bring a shining light to those who have turned their epilepsy in to the power of helping others. The awards would be presented in Bangkok at the 33rd international congress along with the receiving our awards we would each give a presentation telling our story.
From the moment the 8 of us met in Bangkok there was an instant connection that we had known each other all our lives we called ourselves the Golden Brothers and Sisters. Little did we know that saying goodbye at the end of the congress would be so hard. We shed many tears, we reflected on the time we had spent together, we spoke about how much we hope to achieve in the time before we all meet again – hopefully in Paris at the next International Congress.
Since I have returned home to Victoria Australia I’ve been involved in many advocacy projects as a result of my award from the IBE, the first of these was a presentation at the Epilepsy Foundation where I spoke to the staff about my personal experiences in Bangkok Graeme who is the CEO showed a short video of a presentation I gave at the IBE’s General Assembly.
A week after this the Epilepsy Foundation asked me to write an article that would feature in their Statewide newsletter, Epilepsy Tasmania also featured my IBE nomination presentation in their latest brainwaves newsletter.
I was then approached by the Community Engagement and Fundraising Manager Maggie and Michael at the Epilepsy Foundation to feature in an epilepsy focus promotional video part of it would be entered into an advocacy public transport involvement program.
I was approached by the Chronic Illness Alliance of Victoria to present at a woman’s launch workshop called Working From our Strength. The program is designed for women of all abilities, talents and skills to find or return to employment.
I was asked to take part in a conference call with Seer, who are a science, technology and engineering team that specialise in products and services that make diagnosis and management of neurological disorders easy, this involvement was for an upcoming epilepsy forecasting awareness campaign. Seer work closely with Professor Mark Cook who is a world-renowned epileptologist and neurologist, and the director of neurology at St Vincent’s Hospital Melbourne.
The ABC Radio National Jacinta Parsons heard about my story and contacted me to take part in a series called Life Matters on unseen illness and chronic illness that will go to air later in September.
The Curriculum Developer and Content Writer at the Epilepsy Foundation was next to get in touch and has asked me to help in the development of the new Epilepsy Smart Workplace Program, telling me my ideas and experiences are important to developing a relevant and effective workplace program.
The final thing I have been involved in during the last 2 months was an Australian Government Department of Social Services research evening. This included 5 others with lifelong chronic illnesses. We reviewed ads that the Government will be using during the Royal Disability Commission.
So all in all I have been non-stop in advocating for not only those touched with epilepsy but the rights of cross the disability spectrum. None of this would have been possible without the support and acknowledgement from the International Bureau of Epilepsy and the Epilepsy Foundation of Victoria.
I’m honoured to be the first Golden Light from the Western Pacific Region.
Here’s to many more Golden Lights.