Submitted by Linda McGlone
It’s natural as another year comes to a close that we reflect on all that we have achieved throughout 2017. There’s still so much to be done but we’ve had some major wins. I wholeheartedly thank the Epilepsy Action Australia, our partners, stakeholders and clients for all their support, hard work and donations.
Recently, after our Annual General Meeting, we held a special presentation called Hearts, Mind and Heritage: A Journey Together, which was attended by many of our local stakeholders and live-streamed to others across Australia. We were privileged to have as a guest speaker the incredibly eloquent Vivian Greig, whose late husband, legendary cricketer Tony Greig, has inspired much of Epilepsy Action’s work.
Tony’s legacy lives on with MyEpilepsyKey educational tool – now widely recognised by specialists as one of the best patient resources available.
Medicinal Cannabis Remains the ‘Hot Topic’
We were also lucky to hear from medicinal cannabis crusader and philanthropist, Barry Lambert, whose 6-year-old granddaughter has epilepsy.
I share Barry’s belief that it is vital to draw attention to the serious plight of families who have children with intractable (medication resistant) epilepsy, and who remain in a ‘period of limbo’ until medical and law reforms are complete.
Early research suggests medicinal cannabis can reduce the severity and frequency of seizures in certain cases. However, there is much misunderstanding about this issue, particularly the inaccurate belief that medicinal cannabis causes the same psychoactive effects of ‘getting high’ as recreational marijuana.
Through my involvement on numerous government and university-backed councils, my many media interviews and seminar presentations, I am heavily involved in representing your interests, advocating for more research and educating on this new area of hope.
As we embark on this last year in our five year Strategic Plan it’s been great to look at our many key achievements over the past four years, which have included:
- The launch of a new Epilepsy Action logo and faster, fresher website
- Successful collaboration on significant research projects including the Australian Pregnancy Register; PELICAN project (Paediatric Epilepsy Lambert Initiative Cannabinoid ANalysis), and SEISMIC (Sydney Epilepsy Incidence Study to Measure Illness Consequences)
- Assisting over 30,560 people with epilepsy with support in recent years
- A record high of 97% client satisfaction with Epilepsy Action services
- Over 3,600 participants across Australia benefitting our from community based education last year
- Nearly 3,000 users accessing our Online Academy last year
And that just scratches the surface! You can read more about our continuing projects and the considerable progress we have made towards our core objectives in the 2017 Annual Report. You may also like to view the presentation available here.
Increasing Awareness is the ‘Big One’
New research commissioned by Epilepsy Action has found that awareness of epilepsy is not only shockingly low, but decreasing, with only 28% of people aware of the world’s most common serious brain disorder.
Awareness is the key to attracting more funding for research into vitally important areas. It is also absolutely at the heart of our vision of ‘optimal outcomes for people living with epilepsy’.
We need your help in forging acceptance, compassion and understanding for those with epilepsy.
Increasing awareness comes from doing things like dressing in purple and fundraising in creative ways on Purple Day (March 26th). It is the result of putting up a seizure management poster at your workplace, or talking to others openly and honestly about your experiences with epilepsy. You will be surprised at how interested most people will be in your story and keen to help.
Things are Trending in the Right Direction
During 2018, we will continue to be inspired by the brave individuals and families who are affected by epilepsy, and commit to delivering more services that will make a real difference to lives.
I am mindful that even though it is the ‘holiday’ season, unfortunately epilepsy doesn’t take a break for Christmas. Our thoughts are with you, and if you need advice, support or just to talk to someone who understands, we are only ever a phone call away.