The Epilepsy Centre

Today is R U OK Day? Everyday should be that day!

A conversation truly can change a life 💛

People who are regularly asked R U OK? feel more supported, connected, cared about and better about themselves and their situation.

RU OK has a free Conversation Guide and has practical tips for how to navigate an R U OK? conversation, today, tomorrow and any time someone needs your support.

Download it at https://bit.ly/2ZcG05n

Are you looking to step it up in your fundraising efforts? This year, it's all about connecting and striving for the 1 in 25 people diagnosed with epilepsy. So, below are some 2024 theme inspired tips to help you smash your fundraising goals 👊💰💜

Connect
🙋 Personalise your fundraising page - Add a profile picture and bio.
💜 Inspire with your story - Inspire people with your journey and progress, and let them know why this cause is so important to you.
📱 Share, share, share - Share your fundraising page on social media and via email with family, friends and colleagues, and encourage them to donate or join you.
🧑‍🤝‍🧑 Network - Join our Walk for Epilepsy 2024 Facebook group and connect with the community.
🙏 Say thank you - Make sure your supporters know they are appreciated.

Strive
⭐ Lead the pack - Walk the walk and make a self-donation to your fundraising page.
💪 Go the extra mile - get your workplace or school involved either by doing their own fundraiser or supporting yours.
👟 Go the distance - Walk, run or ride as much and as far as you can - the 1 in 25 Challenge is a great way to do this. The more effort you put in, the more support you'll get.

Connect and strive for 1 in 25 this October. Register for the 1 in 25 Challenge at www.walkforepilepsy.org.au/event/sa-nt

BRAIN INJURY AWARENESS WEEK 19TH TO 25TH AUGUST 2024.

Epilepsy has a close relationship with traumatic brain injury and other brain disorders. It can cause neural damage by itself, and epilepsy is a risk factor for a traumatic brain injury through a fall or violent convulsion. Epilepsy can also result from acquiring a brain injury.

Epilepsy caused by a brain injury does not usually start with a severe seizure. It may begin with absence seizures categorized by memory loss, attention problems or other subtle symptoms that may not be recognised as a seizure.

Learn more about Brain Injury Awareness Week - Australia's Brain Injury Organisation website: https://synapse.org.au/brain-injury-awareness-week/

If you need to discuss your epilepsy or require any support or training, please don't hesitate to reach out to one of our Registered Nurses by calling 1300 850 081 or email [email protected]

As of 1 August 2024, Zyamis (midazolam) is now subsidised on the Pharmaceutical Benefits Scheme (PBS). This is expected to benefit more than 10,000 patients each year, providing affordable access to a pre-filled, ready to use oral syringe for people living with epilepsy.
The medication comes in the form of a single-use syringe, which contains a fixed dose of oromucosal midazolam, used to treat the condition Generalised Convulsive Status Epilepticus (SE).
"This PBS listing is an important milestone for the epilepsy community. It will positively contribute by reducing the burden of Status Epilepticus on patients, their families and carers and the healthcare system overall."
Merryn Wallace, General Manager of Clinect, the Australian sponsor of Zyamis
It is recommended that you speak with your neurologist to ensure this medication is right for you.

As of 1 August 2024, Zyamis (midazolam) is now subsidised on the Pharmaceutical Benefits Scheme (PBS). This is expected to benefit more than 10,000 patients each year, providing affordable access to a pre-filled, ready to use oral syringe for people living with epilepsy.

The medication comes in the form of a single-use syringe, which contains a fixed dose of oromucosal midazolam, used to treat the condition Generalised Convulsive Status Epilepticus (SE).

"This PBS listing is an important milestone for the epilepsy community. It will positively contribute by reducing the burden of Status Epilepticus on patients, their families and carers and the healthcare system overall."
Merryn Wallace, General Manager of Clinect, the Australian sponsor of Zyamis

It is recommended that you speak with your neurologist to ensure this medication is right for you. Education and training around administering medication is available for individuals, families, and carers by contacting the National Epilepsy Support Service on 1300 761 487 or [email protected]

As of 20 August 2024, SEER Medical will be closing its clinics Australia-wide. Appointments and referrals made after this date will be cancelled.
The closure is due to the voluntary recall of the SEER Home System.
Any current studies or reporting data collected through VEEG recordings will not be affected and will remain accessible via SEER Cloud for medical practitioners.
It is recommended that anyone affected speak with their doctor to seek alternative diagnostic testing.
The SEER Medical App, which includes seizure tracking functionality, will still be available for use.

As of 20 August 2024, SEER Medical will be closing its clinics Australia-wide. Appointments and referrals made after this date will be cancelled.

The closure is due to the voluntary recall of the SEER Home System.

Any current studies or reporting data collected through VEEG recordings will not be affected and will remain accessible via SEER Cloud for medical practitioners.

It is recommended that anyone affected speak with their doctor to seek alternative diagnostic testing.

The SEER Medical App, which includes seizure tracking functionality, will still be available for use.

For further information, please contact SEER: www.seermedical.com/au

Win a whole heap of exciting prizes when you register for Walk for Epilepsy 2024! This year, we've introduced a range of vouchers and merchandise incentives to keep you motivated in your fitness and fundraising goals.

Don't wait! The sooner you register, the more prizes up for grabs!

Connect and strive for 1 in 25 this October. Register now at walkforepilepsy.org.au/event/sa-nt

We are proud to partner with Nexon to bring you this year's national Walk for Epilepsy initiative.

Nexon is passionate about helping and supporting people in need, including those living with epilepsy. Their partnership means we are in a stronger position to raise awareness and much needed funds for the 1 in 25 people diagnosed with epilepsy during Walk for Epilepsy 2024.

“Support comes in many forms, and you don't need to be directly impacted to make a difference. Whether through fundraising, building awareness, or donating, your support significantly enhances the quality of life for the 1 in 25 people affected by epilepsy. We are proud to sponsor such an important and worthy initiative."
Nevien Badawi, Chief Sales Officer, Nexon Asia Pacific

Connect and strive for 1 in 25 this October. Register for the 1 in 25 Challenge now at walkforepilepsy.org.au/event/sa-nt

About Nexon
Nexon helps mid-market leaders to get ahead of business expectations, improving productivity, continuity and efficiency in high-pressure environments enabled by technology solutions. Their end-to-end capability can deliver an integrated solution that scales with your business. Visit Nexon's website: https://www.walkforepilepsy.org.au/084984

Every day is such a different day in the life of epilepsy, not only for families and loved ones by also our Team here at The Epilepsy Centre!

Three of our wonderful Nurses Sharyn, Michelle and Leeanne met Ali and Pete who came in to our Centre to learn as much as they could about epilepsy awareness, after their Son Felix began experiencing serious seizure activity.

To keep Felix as safe as possible and giving Ali and Pete some sense of assurance, we donated an Emfit Seizure Monitor and Breathable Pillow.

See below the heartfelt email we received from Ali and Pete after their visit. This is truly an example of what a truly rewarding part of working at The Epilepsy Centre and making a difference.

"Dear Sharyn, Michelle and Leeanne,

This is a little thank you for the kindness, generosity and warmth that you all showed to us yesterday.

Peter and I were blown away by the gifts, we honestly were not expecting anything. Felix for the first time in many weeks was found sleeping with his head in the middle of a pillow and looking peaceful. He said he had 'a lovely sleep'.

We are ever so grateful for your care, clear education (thank you Sharyn for explaining so many medical terms that have had us baffled) guidance given.

We both feel a little more relaxed since meeting you all and wish that we had come to you straight away rather than blindly trying to connect the dots ourselves and making things worse.

Can you please say a massive thank you to your CEO. What an amazing, and much needed organisation she is running.

I will keep in touch as I learn things that might help others (genetics, overseas neurology approach etc).

Big hug and thanks for finally stopping my tears with tissues and hope.

Ali (sad Mum) and Pete"

We are so deeply saddened to hear of the sudden and unexpected passing of Bhoe Gertners on May 29, 2024 aged only 26 years old.

We send our sincere condolences to all his family and friends.

‘He never got a chance’: Mum’s grim find in son’s room On May 29 Bree Gertners went into her son’s room to check if he was okay after she didn’t hear him get up for his usual 5.30am trip to the deli.

Congratulations to one of our amazing Ambassadors Mrs Kym Meers OAM for receiving a 2024 Volunteer Recognition Award.

Presented to Kym by the Honourable Federal Minister of Health Mark Butler MP who is also the Local Federal Member for Hindmarsh.

In attendance at the Ceremony and nominated by Robyn Wakefield, CEO of The Epilepsy Centre. "Thank you sincerely Kym for your incredible contribution to raising vital epilepsy awareness, advocacy and support as well as fundraising for The Epilepsy Centre over 10 years".

Our CEO Robyn Wakefield had the pleasure of meeting the Honourable Amanda Rishworth MP today, the Local Federal Member for Kingston and our Australian Federal Minister for Social Services.

Making a huge impact in our SA Community and across Australia! Thank you for everything you do!

Thank you sincerely to our Local Federal Member for Hindmarsh, the Honourable Mark Butler MP for dropping in to catch up with all our Team including all our Registered Nurses, Trigger the Tiger and CEO Robyn Wakefield.

Thank you so very for gifting us through your Local Community Grant an outside covered area for our individuals and families who visit the Centre. You truly make a difference!

Our heartfelt sorrow and strength to family and friends, we are so saddened by your loss. But know, we are here in SA & NT if you need any support (please reach out, we are here for you) 1300 850 081 or [email protected].

The Epilepsy WA community is deeply saddened to hear of the sudden passing of Cam McCarthy and we send our deepest condolences to Cam’s family and friends and to the Fremantle Dockers. Many of our community are avid Fremantle Dockers fans and Cam McCarthy’s talent and love of the game has been an inspiration to so many. Cam was diagnosed with epilepsy in 2020 and we know this gave our community an even deeper sense of connection to him. If you require support please don’t hesitate to reach out to our office which is manned today by Nurse Aoife, and we also include a list of helpline numbers below.

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In an Australian first, a ground-breaking procedure has changed the life of a St Ives father with epilepsy.

The overnight surgery performed at Westmead Hospital NSW could revolutionise treatment options for thousands around the World living with epilepsy.

Father's life changed by new minimally invasive epilepsy treatment, thousands more to benefit from operation

The annual GETA conference brings families, Researchers, and Clinicians together to share the latest developments in genetic epilepsy and developmental epileptic encephalopathies (DEEs).

This event is not only a hub for groundbreaking scientific presentations but also a vital support network for families navigating the challenges of genetic epilepsy.

Register today to gain access to the conference online!

https://www.eventbrite.com.au/.../geta-2024-tickets...

The annual GETA conference brings families, researchers, and clinicians together to share the latest developments in genetic epilepsy and developmental epileptic encephalopathies (DEEs).

This event is not only a hub for groundbreaking scientific presentations but also a vital support network for families navigating the challenges of genetic epilepsy.

Register today to gain access to the conference online!

https://www.eventbrite.com.au/e/geta-2024-tickets-302047210337

Another big Thank You to Kadina Town Hall and Copper Coast Council for lighting up Purple for National Epilepsy Awareness and for making a difference by showing your support! Stunning!

Thank you so much to the Port Augusta City Council for lighting up Yarta Purtli Art Gallery "Purple" to show our support of Purple Day, National Epilepsy Awareness Day and The The Epilepsy Centre.

Yarta Purtli Art Gallery is turning purple this evening (March 26) to show our support of Purple Day and The The Epilepsy Centre.

Purple Day is a global initiative dedicated to raising epilepsy awareness, dispelling myths, and increasing support for people living with epilepsy.

The Epilepsy Centre in Adelaide is an organisation committed to providing quality, caring services to the 63,000+ people living with epilepsy in our state and improving community awareness and attitudes.

Discover more ways you can support The Epilepsy Centre at https://epilepsycentre.org.au/

Drive past and have a look at the purple lights tonight.

In memory of Kailah May who tragically passed away from drowning as a result of a seizure in the family swimming pool on May 16, 2022, aged only 19 years old.

Thank you sincerely to the family and friends of beautiful Kailah for lighting up the night skies of Darwin "Purple" for epilepsy awareness Month.

Raising epilepsy awareness across the Territory and for the memory of Kailah Louise May.

Thanks to the Darwin Convention Centre and Darwin Civic Centre for your support of people living with epilepsy.

Some more stunning photos to share across Adelaide supporting National Epilepsy Awareness Month "Purple Month".

Thank you sincerely to Parliament House South Australia, InterContinental Adelaide, Adelaide Oval, Adelaide Festival Centre SkyCity Adelaide, Clayton Wesley Uniting Church (Beulah Park), Hilton Adelaide, Riverbank Bridge Adelaide for your genuine care and support.

Thank you to The Flinders Ranges Council for lighting up the Quorn Court House and Town Hall "Purple" for National Epilepsy Awareness Day!

Quorn is a small town and railhead in the Flinders Ranges in the north of South Australia, 39 kilometres northeast of Port Augusta.

Quorn is the home of the Flinders Ranges Council local government area. The town has a population of approximately 1220 residents.

With its picturesque setting and heritage-listed buildings, the town is known for tourism and as a filming location, as well as being the terminus of the Pichi Richi Railway.

𝗡𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗘𝗽𝗶𝗹𝗲𝗽𝘀𝘆 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗗𝗮𝘆

Today, 26 March 2024, is National Epilepsy Awareness Day (Purple Day) and to support this day the Quorn Town Hall and Courthouse will be lit up in purple tonight.

Did you know?
Approximately 63,000 people live with epilepsy in South Australia and 24,000 in the Northern Territory. Epilepsy can be a devastating condition to manage and the support The Epilepsy Centre provides to the community is an absolute necessity.

Any person at any time of their life can be diagnosed with epilepsy. There are over 114 different epilepsy syndromes and seizure types. 1 in 26 people will have a seizure in their lifetime and 1 in 100 will develop epilepsy permanently. 1 in 1000 people with epilepsy die each year due to Sudden Unexpected Death in Epilepsy (SUDEP). 40% of people with epilepsy are under the age of 18 and 40% are over the age of 60.

The Epilepsy Centre is based in Adelaide and is a not-for-profit organisation which has been operating for over 48 years and is committed to providing quality services and support to people living with epilepsy and improving community awareness and attitudes in South Australia and The Northern Territory.