Submitted by Carol Ireland
THE PURPLE PROJECT
Since 1952, Epilepsy Action Australia has been supporting people with epilepsy. More than 250,000 people in Australia have epilepsy and more than 800,000 of us will be diagnosed in our lifetimes. Epilepsy can have a profound impact on individuals, families and entire communities and as such, there is still much to be done to minimise this impact and provide opportunities for better lives and futures.
Across the world some 65 million people are diagnosed with epilepsy. It is a global issue and a condition that is often still surrounded by myth and misconception. Every day, more children and adults are diagnosed and despite currently available medical treatments, more than a third of those with epilepsy will not find an effective treatment option. For some, the side effects of the currently available antiepileptic drugs may be intolerable and many people suffer life long negative side effects as a result of these drugs.
Epilepsy Action has a long standing track record of powerful impact and positive outcomes. For decades we’ve provided support that is readily accessible to people with epilepsy, their families and carers, no matter where they live in Australia. Epilepsy Action is close to the people it serves: You, your families and friends. You know us.
For the years it has been serving the community, Epilepsy Action has raised the required funding through the generous support of the community, with only a small amount of funding from government. We are motivated and directed by the needs of those we serve.
There is much to be done and often limited resources present a barrier to moving forward.
We have been listening to you – on our social media, through your emails and phone calls, and via your feedback in our surveys. We have heard what you are saying. Together, with clear priorities, we can build a better future and that’s why we are launching:
THE PURPLE PROJECT (our 3 s):
ROVIDERS: People with epilepsy need better access to specialist Health Care Providers. We are developing a range of initiatives to improve access. Our first initiative is the Epilepsy Nurse Line which was launched in June this year, with funding from the Federal Government. This provides real time access to Registered Nurses, across Australia, seven days a week. We can do more to ensure that people living with epilepsy have the best possible access to a range of skilled providers, in a way that is timely and convenient.
REVENTION: There are too many epilepsy related deaths. We are currently developing initiatives to work towards reducing epilepsy deaths, especially those that result from Sudden Unexpected Death in Epilepsy (SUDEP) and others that are clearly preventable. We are working to fund and develop new healthcare tools and education for health care practitioners that will help minimize risk.
OSSIBILITIES: While there are numerous antiepileptic medications available, we know that they don’t work for all people or seizure types. We need to encourage and support research, to advocate for new treatment options including the newly emerging area of cannabinoid therapeutics, and ensure they are both accessible and affordable.
P is a great letter isn’t it? It is at the beginning of many beautiful words. Lately we have been thinking about the next Purple Day (2020) and I came to focus on the letter P. It got me thinking about our Purpose – why we do what we do … and it is all about the People!
Will you Pledge to support the Purple Project?
- Sign up with your email address to Participate
- Become a Proponent (see definition in the PS below ?) of the Project
- Give us your Perspective – your feedback and suggestions in surveys we will send
- From time to time use your social media to Post in support of the Purple Project
- Download your PPP (Purple Project Partner) certificate; display in Prominent Place
- Help Promote our Purple Project initiatives to your contacts – social media can be Powerful!
- We will keep you Posted by email on the Progress of the Purple Project
- We will consult with you on Proposals for any new initiatives in the Purple Project
- We will respect your Privacy and never give your email address to another party
- We will commit to Performance and accountability on the Purple Project
I’ve also been thinking about my own role in Epilepsy Action. I often describe myself as a “patient advocate”. Perhaps I am a Protagonist (definitions: a proponent for or advocate of a political cause, social program, etc.; the leader or principal person in a movement, cause, etc.). ?
Epilepsy Action needs your support to work with us in Partnership. This is my Personal Plea for you to commit to action4epilepsy now and help us implement the Purple Project.
Click here and be part of People Power – together, we can minimise the impact of epilepsy on children, adults and whole families and provide opportunities for better lives.
Warmest regards and thanks,
P.S: A Proponent is an advocate or supporter of a course of action, we can’t do this without you! Please take the pledge now – click here.