Epilepsy Foundation of Australia in Melbourne, Victoria, Australia | Non-profit organisation

Epilepsy Foundation of Australia

Locality: Melbourne, Victoria, Australia

Phone: +61 3 8809 0600

Address: 587 Canterbury Road 3127 Melbourne, VIC, Australia

Website: http://www.epilepsyfoundation.org.au/

Likes: 22967

Add/Update information

Reviews

Tags

• Non-profit organisation
• Charitable organisation
• Social service

25.01.2022 We want to break down the stigma against epilepsy. If you know someone with epilepsy, share this with them and let them know that they’re loved

25.01.2022 Have you joined our exclusive Facebook group? It’s an online community where you can meet people from all walks of life and is a great way to keep inspired, meet new people and get active this October. As part of this year’s virtual W4E, we will be hosting private workout sessions in our group. Led by Brie from Indi Active, you’ll get to work up a sweat in her beginner, intermediate or advanced classes - all for free! Join us if you’d like to: ... - Hear some of our fundraising tips and tricks - Share pics and videos of you walking, running, swimming or riding for epilepsy - Offer and receive loads of encouragement and fitspo - Get advice on how to reach your kilometre goal for October - Celebrate all your W4E achievements and milestones Check out the private Epilepsy Walkers Around Australia Facebook group via the link below and connect with our fun and supportive community! We can’t wait to meet you https://www.facebook.com/groups/epilepsywalkers/

25.01.2022 Today is World Children's Day. There are around 1 in 200 children living with epilepsy in Australia, and we want to make sure they all feel safe and supported at school. Because epilepsy is especially prevalent in young children, it’s important that all teachers, carers and family members know how to properly care for someone living with epilepsy. This can include getting seizure first aid training, learning how to administer emergency medication and how to follow an epilepsy management plan. If you’d like to learn more, head to our website.

25.01.2022 Emma’s Story We lost my only brother, Simon this year; He was 46 years old. When we first learned that Simon had passed away, life as we knew changed in the blink of an eye. Simon was diagnosed with Epilepsy when he was 23 years old, following several tonic-clonic seizures. In the beginning, I don’t think Simon realised how serious Epilepsy was, and as a young man in his 20s, he probably didn’t think it would have an impact on his life. However, he realised that a combin...ation of missing his medication, lack of sleep and generally not taking care of himself would inevitably result in a seizure. Simon then took control; he looked after himself, exercised, learnt what his triggers were and was able to manage his Epilepsy as much as he could. I can never un-hear those words that Simon has gone. This all just seems so wrong, so surreal. I never imagined a life without my brother beside me. The pain I feel every day is indescribable. It’s a pain I never thought possible. I have a fantastic amount of support around me, but as Simon’s only sister, this is a very lonely journey. It is one of the reasons I am doing the Walk for Epilepsy. I want to honour Simon and to make him proud. I will do whatever I can to help prevent another family from going through our heartbreak. We will hold tight to all our memories, and as a sister I have so many memories: sitting together at Christmas, on Mum & Dad’s deck just being together. There was great food and wine, laughter and a constant flow of family and friends. There was nothing better, and we will cherish these times so much more now that Simon has gone. The Epilepsy Foundation has been such an amazing support to my family and me, and we will continue to support the Foundation in any way we can. I like to think of Simon as a supernova he was the brightest shining light in our lives but he was only able to stay for a short time.

23.01.2022 Are you looking for a simple and easy way to help the Epilepsy Foundation? Vote for us to win in the Haymes Paint Shop Helping Hands Project! We're in the running for a completely donated repaint of our office in Surry Hills! This year, Haymes Paint is running its Helping Hands competition to help local organisations refresh their space with a fresh coat of paint. If you're interested in supporting our run, all you have to do is head to the website, enter your state and cast... your vote by selecting the Epilepsy Foundation! Once you have entered, be sure to share your vote on Facebook and encourage your friends and family to join too! Please visit https://www.haymespaintshop.com.au/helpinghand today - your support is greatly appreciated! Voting closes at 11:59 pm Sunday 11 April.

23.01.2022 Macquarie University is now running a free online treatment program to help people with epilepsy manage their emotional and cognitive wellbeing. The course offers strategies for managing issues such as depression, anxiety and memory problems, and is designed for people with neurological conditions. Learn more about the Wellbeing Neuro Course and current clinical trial at the Macquarie University eCentreClinic via the link below: https://www.ecentreclinic.org/?q=WBNCourse

23.01.2022 What types of seizures do you experience? We want to highlight how seizures often vary from person to person and don’t always look like what you see in mainstream media Do you experience focal or generalised onset seizures? Share below and we might feature your story next week.

22.01.2022 Did you know that up to 70% of people living with epilepsy are able to manage their seizures? Anti-epileptic drugs (AEDS) are the most common form of treatment, although it can be tricky to stay on top of your medications, especially when epilepsy can cause memory difficulties. Taking your AEDs as prescribed is essential in managing your epilepsy. Here are some of our favourite tips to help you stay on top of your medications. - Make sure you always have your medication...s on hand by setting up auto-refills to be delivered for free with Medrun - Use pillboxes to help organise your medications and provide a visual reminder for when you have or haven’t taken your medication. - Make medicine-taking a habit by linking it with a pre-existing daily activity like brushing your teeth. - Set digital reminders for the odd chance that you forget - When travelling, always bring a bit more than you think you need in case of delays. - Enlist loved ones to help support you and be your personal cheerleader. What are your go-to tips and tricks to stay on top of your medications?

22.01.2022 Tara’s Story Tara’s sister, Jade, was diagnosed with epilepsy at around nine years old. For a few years, Jade’s seizures were well-controlled with medication, and she was able to live a normal life. However, in her early 30s, her seizures became less controlled as a result of hormonal changes. Sadly, Jade passed away suddenly and unexpectedly in August 2020. While the Andrews family is still awaiting the Coroner’s report on the exact cause of death, Tara says the inve...stigation into Jade’s death appears to be going in the direction of Sudden Unexpected Death in Epilepsy (SUDEP), whereby a person with epilepsy dies suddenly and without warning. The first time I heard about SUDEP was after speaking with the Epilepsy Foundation, just before starting the Walk for Epilepsy this October - two months after my sister passed away. Since joining the Walk for Epilepsy support group on Facebook, I have read stories from other people who have lost a loved one to SUDEP. I’m confused why no doctor has discussed this with my family, because people should be talking about it! I don't want anyone to have to go through what my family is going through. Tara says she saw the Epilepsy Foundation’s Walk for Epilepsy appear in her Facebook feed. As I had just lost my sister, I felt that it was a sign that I needed to do something to honour Jade. So I’m walking to support the Epilepsy Foundation, which helped my family, and to remember my sister. Tara wants other families to Speak to your doctors, speak to the Foundation and educate yourself as much as you can to hopefully prevent this terrible thing from happening to your family member. Because losing someone you love unexpectedly is pain that no words can ever describe. We want to thank Tara for sharing Jade’s story. Your tremendous courage is inspiring, and we hope that by sharing your story, it will bring comfort to others who have lost loved ones to complications from epilepsy.

22.01.2022 6 Days to go! Who will you be walking for this October? Every year, we ask our participants to write who they will be walking for on their bib. To make it easier for everyone to join in the fun, this year we’ve created bibs that you can download from the W4E website. Grab your bib via the link below, and then fill in the name of the person you’re walking for this year. We want to hear your stories, so share them in the comments or tag us in your pictures! https://fundraising.epilepsyfoundation.org.au//w/resources

21.01.2022 Do you reckon you could walk the entire coast of Australia? Here's how it works... Walk, run or ride as many kilometers as you like during October and help raise vital funds for people living with epilepsy. You can set your own pace and participate from anywhere in the world It's a fun way to stay connected with friends, and raise funds for a great cause What are you waiting for? Register for free today.

20.01.2022 Are you looking for your next dream role? Come work for the Epilepsy Foundation! As our new Research and Knowledge Translation Manager, you’ll have an exciting opportunity to join a large project to create transformational change in the services available to Australian people living with epilepsy. You’ll be working to support the development and implementation of a nationally integrated Information, Communication & Technology platform. To find out more about the role, visit our website https://epilepsyfoundation.org.au//now-hiring-research-an/

20.01.2022 Are you caring for a child who experiences Infantile Spasms (IS)? Infantile spasms are a rare, but very serious type of seizure which typically occur in the first year of life. This is a severe epilepsy syndrome seen in infants, which involves seizures that are like ‘jack-knife’ movements. Typically, these spasms cause a child’s arms to be flung out as the knees are pulled up and the body bends forward. However, movements can also be more subtle and limited to the neck or ot...her body parts. The seizures tend to occur in clusters, and are most common after waking up. From December 1-7 this year, we will be raising awareness of IS, as part of the sixth annual Infantile Spasms Awareness Week. This week is about learning how to recognise infantile spasms and what action to take. As with so many conditions, the earlier treatment is sought, the greater the chances of the spasms being effectively treated. We’ll share stories of families who are currently living with Infantile Spasms, in the hopes of raising awareness and understanding. If you’d like to find out more, visit our site: http://ow.ly/yRW950xteN5

20.01.2022 Sarah’s Story Today marks two years since Sarah and her family lost her brother Joe to Sudden Unexpected Death in Epilepsy (SUDEP). She says that Losing Joe, especially the way we lost him has left me broken in a way I can’t fully explain. He was taken from us and in my mind and my heart, it still feels like yesterday. Sarah remembers that early morning phone call from her mother, who said Joe had had a seizure and that the paramedics were working on him. Sarah says... her mum’s words were, I think he’s gone. I still remember standing in his kitchen with Mum and Dad sitting down. We’d had police and coroners around us, then they took Joe away. What was always a family of four were now a broken family of three, wondering what had just happened to our loved one, says Sarah. The aftermath of Joe’s death has been devastating for the family, and it has taken some time for them to come to terms with the loss of their son and brother. It took seven months for us to get notification of cause of death. Seven months of wondering what happened and how everything went so wrong. Sarah explained the shock of the unexpected. Joe was diagnosed with epilepsy at age 13. He passed away, age 40 at home while packing his lunch for work. No one deserves to die this way. Everyone is worth something and not knowing why is tough to handle. Until that day, I had no idea SUDEP even existed. I have lived with Joe through all the years he had epilepsy, and yet I had no idea that you could die this way. How could I not know? Every year around 300 Australians die from epilepsy-related incidents, while fifty per cent of these die from SUDEP. To support services to people with epilepsy and raise awareness of the condition, Sarah and her family participated in our Walk for Epilepsy last year. This is why I walked with my family. I will do everything in my power to spread the word that absolutely no one should go it alone when it comes to epilepsy.

20.01.2022 We’ve officially reopened our Op Shops! It’s been so wonderful seeing you all again, and we can’t thank you enough for all your support over the last few months The majority of our stores are now open, so message us here or give your local store a ring if you want to check opening hours. If you’re searching for a new role, we’re currently looking for volunteers in our stores. Our op shops help raise funds for people living with epilepsy, and none of it would be possible without our wonderful volunteers. You can apply online or by dropping into your nearest store more info can be found on our website. Come volunteer at one of our eight Melbourne stores, and make a real difference.

20.01.2022 Join us tonight at 7:30 as we look back on the challenges and triumphs of 2020! Our CEO, Graeme Shears, will deliver an update on the Foundation's research initiatives before we dive into some of the year's top moments. Then our focus shifts to SYNGAP1 Syndrome, a rare genetic disorder that has formed a key pillar of our research efforts to date. We'll hear from mother of two Danielle Williams, who will speak of her lived experience with two beautiful daughters living with SYNGAP1. Then Director of The Florey Professor Steven Petrou will join us to discuss research into SYNGAP1. We'll be starting at 7:30pm, so set your alarm and keep your eyes on this post. We'll see you then!

19.01.2022 MERRY CHRISTMAS! The Epilepsy Foundation wishes you all a safe, happy and seizure-free Christmas Our office and infoLine will be closed from now until Monday, 4th of January 2021 If you need support over the holidays, call Lifeline on 131 114. For medical advice, please visit your GP or specialist.

19.01.2022 Looking for a reason to get out into the sunshine? Why not make a difference while you exercise, by taking part in Walk for Epilepsy around Australia! This year’s walk is taking place online, meaning you can walk, run, swim or cycle your local neighbourhood to support people living with epilepsy. We’re setting off on a 25,000-kilometre journey to support the 1 in 25 people living with epilepsy, and we’d love you to take part! Sign up at walkforepilepsy.com.au.

18.01.2022 3 days to go! This Wednesday night we’ll be going live to answer all your questions about Walk For Epilepsy! Wondering how to log your kms? Looking for some fitspo? Join us at 6 pm, and we’ll talk you through everything you need to know before W4E officially begins October 1. Click 'Get Reminder' below and you'll get a notification when we're live, or head to our Facebook page at 6 pm to watch.... See you then!

17.01.2022 Check out Larni teaching our participants how to administer emergency medication over Zoom. She is one of our experienced Epilepsy Educators, and like many of us, she’s taken her work online. We are currently delivering all our education programs through video conferencing, so we can reach even more people and help more Australians learn seizure first aid. This module is for those who want to improve upon their knowledge and understanding of epilepsy, and have already undert...aken our An introduction to understanding and managing epilepsy or Understanding and managing epilepsy for Disability Support Workers course. In this training, participants learn all about a specific person’s Seizure Management Plan and their individual emergency medication needs. As part of the session, we will guide you through the process of administering the prescribed emergency medication. You’ll have the chance to practice the skills and be assessed on your ability to read the individual’s EEMP and administer the emergency medication according to those plans. Visit our website to join our next session, or call us at 8809 0600 to find out more.

17.01.2022 With your help, we’ve raised more than $285,000 and walked nearly 75,000km - almost three laps of Australia! On behalf of people living with epilepsy - thank you You can still log kilometres until midnight tomorrow, and donations will remain open until next week. Head to our website to find out more.

16.01.2022 Hemi’s Story Almost one year ago, just after his 4th birthday, Hemi started having seizures. Apart from occasional bouts of asthma, Hemi had always been a healthy four-year-old boy. He’s always been the most happy, active and gorgeous boy. You wouldn’t tell looking at him that he lives with epilepsy, says Hemi’s mum Alexandra.... By the time Christmas came, he was having multiple seizures each day, and he started medication for epilepsy. He is now on his third type of medication, as Hemi’s family have not been able to maintain control of his seizures. Hemi has had multiple EEG’s, MRI’s and blood tests in the last 12 months and has recently been diagnosed with Focal Cortical Dysplasia in his right frontal lobe. This will require surgery soon. Alexandra says I just want Hemi to be given the same opportunities in life as any other child. I don’t want him to ever feel like he is different or being held back in any way. Thankfully, Hemi has the most amazing support from many people. His two older brothers adore him, and he loves going to kinder and seeing his friends. When Alexandra recently shared Hemi’s story with her community, she was blown away by their response. Hardly anybody in our town knew that Hemi lives with epilepsy. We hadn’t kept it a secret, but it was simply something we privately dealt with as a family. It’s been wonderful to see how our friends and family have rallied behind us. As part of this year’s Walk for Epilepsy, Hemi’s team raised more than $3,000 and walked 70kms for people living with epilepsy. Alexandra says she joined Walk for Epilepsy because she wants to raise money to help other epilepsy warriors gain all the support they may need on their journey.

15.01.2022 This week, the Australia Epilepsy Project (AEP) was hoping to share the result of the Medical Research Future Fund (MRFF) Stage 2 Grant. Unfortunately, the decision has been delayed until early November. This project will help people who have epilepsy gain better control of their seizures, by giving them access to advanced imaging, cognition and genetics testing. The hope is to develop a deeper understanding of epilepsy and how to treat it. ... This delay in the funding announcement means that people can’t be referred into the project yet and will result in more uncertainty for people How can you help? Talk about this project with your neurologist, GP, friends and family. If you’d like to hear more about this project, sign up to AEP’s newsletter at https://epilepsyproject.org.au/support/

15.01.2022 Read all about Goldie’s story in the Camperdown Chronicle below Goldie has been living with epilepsy since she was ten months old, when she would have up to 100 seizures a day. She has been diagnosed with several types of seizures, including infantile spasms, focal seizures and absence seizures. Charlene and Colin, Goldie’s parents, said that it took some time before they were able to process this news. When Goldie was first diagnosed, I rang the Epilepsy Foundation and ...found caring people on the other end of the phone. They helped me to understand, gave me the information I needed and were there to listen to me, said Charlene. I just wanted to talk to somebody who did understand. And the foundation was there for me she said. Little Goldie has shown such resilience and strength, and we’re glad that more people have been able to hear her story You can support families like Goldie’s by taking part in Walk for Epilepsy this October check out our website for more information. https://www.camperdownchronicle.com.au/goldie-is-a-ray-of-j

15.01.2022 Beau recently shared what it’s like to work at his dream apprenticeship with South Coast Register. Beau lives with epilepsy and experiences a seizure about once a month. He was initially apprehensive about the new job because "It is daunting to come into a new environment and know eventually a seizure will happen." However, when he had his first seizure at work, his teammates handled it wonderfully. They quickly applied appropriate seizure first aid and Beau says their suppor...t made him feel more accepted at work. "I got good help - Vince, the head baker here put me in the recovery position and called the ambulance. Afterwards, everyone looked after me and checked on me. I felt really comfortable to come back to work," says Beau. We want everyone to feel as supported as Beau does at work. That’s why we’re developing the Epilepsy Smart Australia program. Research shows that, despite the condition’s prevalence, ninety per cent of Australians don’t have access to the epilepsy support they need. In response, the Australian Government has funded the Epilepsy Foundation to take our work to a national scale through a new program titled Epilepsy Smart Australia. We are expanding our delivery of services that will reduce the chronic health impacts experienced by Australians of all ages living with epilepsy. If you’d like to find out more about Epilepsy Smart, head to our website. https://www.southcoastregister.com.au//beaus-earnest-atte/

14.01.2022 It's finally here! Over the next 25 days we'll be walking our local neighbourhoods towards a collective 25,000km in support of people living with epilepsy. Here, the heads of the Epilepsy Foundation, Epilepsy Tasmania and Epilepsy ACT get out and about to welcome you to the walk. Not signed up yet? There's still time! Head to walkforepilepsy.com.au now.

14.01.2022 Chloe’s Story I am 16, and I’ve been having seizures since I was 11 years old. I’m a gymnast, and as soon as I started having seizures, I was told by my doctors that I no longer had a chance and that I should just quit the sport. I didn’t give up because I loved gymnastics, and I wanted to prove people wrong. ... I had to stop doing bars for seven months because of my condition. I was frustrated by the skills I lost and by the number of people who didn’t believe in me, but I didn’t give up. When I was allowed to go back on bars again, I had a lot of ups and downs, so many falls and injuries that I fell far behind everyone else. But with the work I put in, I was able to build my way back up gradually. I worked one on one with my coach, and after a few attempts, I got beyond my previous level. In January I moved up a group! I didn’t let epilepsy get in my way because now I know I’m the one in control and not my condition. Epilepsy is what made me stronger and who I am. Thank you to Chloe for sharing your story with us! If you’d like to help us raise awareness of epilepsy, message us to share your journey with our community.

13.01.2022 THANK YOU We've been blown away with the fantastic fundraising that's taken place so far for Walk for Epilepsy around Australia. Hundreds of you have taken up the challenge, signed up friends and family and raised serious money to improve the lives of people living with epilepsy. Together, we really can achieve anythingeven a cure.... The walk is still seven days away, and we're encouraging even more of you to join us in our challenge. By keeping at our efforts, we can make an even larger difference. From the bottom of our hearts: thank you.

13.01.2022 Harry's Story. For Mick and Kerry, the speed at which their son’s epilepsy progressed from mild to severe will haunt them forever. Harry, aged just 19 in 2012, died as a result of a nocturnal tonic-clonic seizure, only four months after he had started having seizures. Harry was a healthy, typical 19-year-old. He was working and playing football for St Bernard’s in the Victorian Amateur Football Association, which is why it was such a shock when he died suddenly, says Mick.... Harry started having absence seizures at just 19, says Mick. At the start, they were mild, but they progressed in severity very quickly, within a matter of months. Then one night, he had a major tonic-clonic seizure, and we had to take him to the hospital. Then early one morning, just four months after his first seizure, he came home from work around 4.00 am. Sometime between then and 8.00 am he had a severe seizure, and he was gone. He had an appointment scheduled for that morning to hear his diagnosis, but it was too late. Following Harry’s death, the Overmans have been frustrated that the Coroner would not make a finding of SUDEP. He would not say that Harry died from his epilepsy, as he had not yet been diagnosed. So SUDEP is not the reason given on his death certificate, but we know in our hearts that that’s what it was. Kerry wants to get the message out that it’s crucial to get diagnosed as quickly as possible. We thought we had time, but we didn’t. It was four months from when he started having seizures to when he died. We never knew that death was a possibility or that epilepsy could be life-threatening. Mick and Kerry have reached out to the Epilepsy Foundation since Harry’s death and have attended the organisation’s memorial services, for families and friends who’ve lost loved ones to epilepsy. We’ve all had to deal with the grief, says Kerry. The Foundation’s services have helped us realise we are not the only ones who’ve lost someone to epilepsy.

12.01.2022 Meet Larni! She is one of a team of Nurse Educators at the Epilepsy Foundation who provide education and training in epilepsy management, seizure first aid, the creation and use of Epilepsy Management Plans and the management of emergency medication to people with epilepsy, their families and carers, and the wider community. Larni brings four decades of experience as a Registered Nurse and a wealth of invaluable knowledge to her role. She joined the Epilepsy Foundation’s Edu...cation & Training team as a Nurse Educator in August 2019, after working for 14 years as a School Nurse in a Special Developmental School (SDS). There, she advocated for optimal health care, education and disability management of students. All students enrolled at an SDS have a moderate to severe intellectual disability. While working in this busy environment, I supported students with complex health conditions including epilepsy, genetic syndromes and Autism Spectrum Disorders, Larni says. Many students enrolled in an SDS setting have a diagnosis of epilepsy, including complex syndromes such as Dravet, Lennox-Gastaut, Doose, Juvenile Myoclonic Epilepsy Syndromes and neurological conditions such as Rett’s and Angelman’s Syndrome, Lissencephaly, Tuberous Sclerosis and Muscular Dystrophy. I have cared for clients with each of these syndromes. I am delighted to be able to bring my nursing experience and my broad knowledge of epilepsy syndromes and their effects on a person living with Epilepsy (PLWE) to the Epilepsy Foundation, where the range of clients and their needs are diverse. I think I bring to the job a level of experience and understanding about disability and the impact it has on someone living with it. I also have a deep knowledge of what a family caring for someone with a disability goes through, which gives me insight when managing a person’s epilepsy. I can use that knowledge when providing epilepsy training in special school settings." "I believe it is vital to acknowledge that the family are the experts on the individual needs of their PLWE and that this collective knowledge must be valued and respected.

11.01.2022 Wow! Everyone has been hard at work preparing for this year’s Walk for Epilepsy. It’s not even October, and already our fundraisers have logged more than 1263kms as part of their training! We’d like to thank everyone who has already registered, and we can’t wait to see how far you’ll walk this October! A reminder that all kilometres logged will reset at midnight September 30, ready for the official start date of October 1! Good luck and keep training hard.

10.01.2022 Are you interested in joining Australia's most extensive MC observational study? ACR has launched the CMOS, which will assess medicinal cannabis use for people living with epilepsy. The clinical trial will work with 20,000 people over the next five years and could be a pathway for providing medical cannabis access. While it's shown promising effects, there is currently insufficient evidence for cannabis to be prescribed as a regular treatment for epilepsy. This study is a...n important part of this process to understand how cannabis may be helpful in the treatment of epilepsy. If you'd like to get involved, visit https://appliedcannabisresearch.com.au/cmos-study/

09.01.2022 Professor Terry O’Brien will be presenting a free online webinar on SUDEP tonight. As Head of Central Clinical School at Monash University, O’Brien is an expert in his field and is at the forefront of SUDEP research. We hope that by raising awareness, we can protect more families from the pain of losing a loved one to SUDEP. If you have any questions on the night, you’ll have the opportunity to ask Professor O'Brien directly by taking part in the Q&A discussion. Click here to register your interest: monash.edu/medicine/ccs/events/2020-ccs-public-lecture

09.01.2022 Do you know how to help someone experiencing a tonic-clonic seizure? As part of Epilepsy Awareness Month, we’ve shared the do’s and don’ts below If you’d like to learn more about seizure first aid training, visit our website. Remember to call an ambulance (000) if:... - The seizure lasts more than 5 minutes or a second seizure quickly follows - The person remains non-responsive for more than 5 minutes after the seizure stops - The person is injured - The seizure occurs in water - The person is pregnant - You think this is the person’s first seizure - The person asks for medical assistance - You feel uncomfortable dealing with the situation. See more

09.01.2022 We’re excited to bring back our Living with Epilepsy Webinar series this summer: conversations with experts and people living with epilepsy about things that matter in everyday life. From self-confidence to memory management, we’ll bring you new topics with new people every Monday afternoon. Our first speakers are our very own Margaret Jarvis and Rheana Nation. Margaret is an Epilepsy Nurse Educator who helps childcare and early learning centres, schools, disability providers..., and other organisations become Epilepsy Smart. Rheana is one of our dedicated Epilepsy Support Workers, helping clients develop Epilepsy Management Plans (EMPs) and more. In this video, they’ll discuss epilepsy first aid and the importance of EMPs. For more information on seizure first aid, visit our website: https://epilepsyfoundation.org.au/unders/seizure-first-aid/ You can also develop an EMP for people of all ages living with epilepsy. Find out more here: https://epilepsyfoundation.org.au//epileps/epilepsy-plans/ Stay tuned for next week’s conversation on practical memory strategies with Ben & Allison Wilson-Powell. See you then!

09.01.2022 Adrian’s Story Adrian has been living with epilepsy since the age of 10. He also has an intellectual disability and autism, and is passionate about showing young people what can be achieved with determination and enthusiasm. I just want to help people and show that epilepsy doesn’t have to hold you back, says Adrian.... Adrian is an athlete with Special Olympics Australia and has participated in State and National Games. He has competed in numerous sports including athletics, running, power walking, turbo javelin, swimming and basketball. When not busy competing, Adrian enjoys creating art and coaching sport and dance classes in his local community Adrian participated in our Walk for Epilepsy last year, walking 6.2 kilometres to help fundraise for our epilepsy support programs. This year’s Walk will be held online and will help the Epilepsy Foundation raise funds for people living with epilepsy. With your help, we are working to find a cure for epilepsy. If you’d like to sign up for the walk, visit walkforepilepsy.com.au. Together, we can build a brighter future for people living with epilepsy and their families

08.01.2022 Thank you to our wonderful community! We are completely blown away by how many of you got involved in Make March Purple this year. Together, we’ve shown the world what it’s like to live with epilepsy and helped raise awareness and funds for the 250,000 Australians currently living with epilepsy. Thank you to everyone who opened up about their epilepsy journey, who shared information about seizures and gathered with family and friends to celebrate Purple Day. We couldn’t have done it without you. What was your favourite part of Purple Month?

08.01.2022 What is the real cost of epilepsy? New research from Monash University shows a 10% improvement in seizure freedom would prevent 1,633 deaths and save $1.1 billion in healthcare costs. The research found that with no seizure improvement, there would be 14,000 excess deaths in Australians aged 15-69. This amounts to around 78,000 years of life lost, $4.1 billion in additional direct healthcare costs, and $32.4 billion lost in equivalent GDP. While the research found epilepsy ca...rries with it a substantial burden in both economic and societal terms, it found improved seizure freedom of 10 per cent would save not only lives but also add $7.8 billion in enhanced work productivity. To address this, the team from Monash is actively working on understanding how to improve first seizure assessment and management in 'First Seizure Clinics'. This exciting project is being co-funded through the AERF. You can read more about the project here: https://epilepsyfoundation.org.au//austra/funded-research/

08.01.2022 This October, you achieved something incredible. You’ve raised more than $290,000 for people living with epilepsy and walked over 75,000 km. More than 1200 people from across the country came together to conquer their local streets in Walk for Epilepsy around Australia. Even though we couldn’t physically be together, we’ve never been better connected; we’ve shared more stories, inspired more people, and supported each other better than ever before. To each and every one of o...ur walkers, thank you. To everyone who donated to improve the lives of loved ones and strangers alike, thank you. Every step walked, every dollar raised, every conversation started has made a profound difference. With your support, we’ll be able to help more families, train more schools, and research with more determination than we’ve ever been able to. The money raised helps us ensure that all people with epilepsy have access to information and are able to manage their epilepsy well. We’re working with schools to ensure that they understand epilepsy and how to respond to the needs of their people living with epilepsy. Our goal is to ensure that society understands epilepsy so that people with the condition feel connected and included in the community. We’ve still got work to do. Research into epilepsy, and into finding a cure, continues at a rapid pace. People living with epilepsy continue to face stigma and uncertainty. We’ll keep working, and we’ll do it in the knowledge that each of you is working too. Together, we can achieve the impossible. You can still log kilometres until midnight tonight, and donations will remain open till next week.

08.01.2022 Tomorrow is SUDEP Action Day. Over the next few days, we will be sharing stories to commemorate the estimated 50100 people who lose their lives to SUDEP every year and to help raise awareness of Sudden Unexpected Death in Epilepsy. SUDEP is death that cannot be attributed to another disease, injury or accident and is the most common epilepsy-related cause of premature death. Young people with epilepsy are up to 40 times more likely to die suddenly than people of the same ag...e who don’t have epilepsy. We’re working towards a future where no-one has to die unnecessarily from epilepsy. If you have any questions about SUDEP, let us know in the comments below.

08.01.2022 Check out this great article in Pakenham-Berwick Gazette! Ava has been living with seizures since she was nine-years-old and underwent over a year of testing before she was finally diagnosed with focal epilepsy. Her family says that it has become much more challenging to manage her epilepsy in the wake of COVID-19. Ava and her family will take part in this year’s Walk For Epilepsy, to raise money for people living with epilepsy. Check out their page and join in at walkforepilepsy.com.au

08.01.2022 2 days to go! Thanks to your incredible efforts, we’ve already raised more than $120,000! Your generosity means we can provide more support to the 1 in 25 Australians who will experience epilepsy in their lifetime. We’ve been so inspired by how hard you’ve been training for this year’s walk, and want to thank you all for your extraordinary efforts so far. W4E officially begins on October 1, so we wanted to remind you that all kilometres currently logged will reset to zero o...n September 30. This is so we can collectively walk together in October and show our support for all Australians living with Epilepsy. We can’t wait to see how far you walk this October, so please share your W4E journey by tagging us in your pictures. Thank you for your continued fantastic efforts and great work!

07.01.2022 It’s October 1st, which means Walk for Epilepsy around Australia has officially begun! Tonight we’re bringing you a very special livestreamstraight from our walkers-only Facebook groupfeaturing an interview with one of our wonderful participants, Alana. #epilepsy #epilepsyfoundation #charity #walkforepilepsy #walkwithme

07.01.2022 Adam’s story is one that many people can relate to. For more than a decade, he lived with daily and drug-resistant seizures, as a result of a traumatic head injury. These severe seizures caused Adam to regularly injure himself, often dislocating his shoulders and breaking bones. He lived with the constant threat of status epilepticus, where seizures occur in close succession or the person doesn't recover between seizures. Doctors told Adam that his epilepsy was untreatable an...d that there was nothing to be done. I had tried every medication under the sun and nothing worked, says Adam, I was told to accept that this would just be my new normal. Adam’s life changed when he was chosen as one of the first people in the world to join the MRTLE Study for people with drug-resistant epilepsy. As part of the study, doctors at St Vincent's Hospital Melbourne implanted a pump into his abdomen that sends an anticonvulsant drug directly to the source of his seizures. As a result, Adam hasn’t had a significant seizure in over six months and hasn’t been admitted to the hospital in more than a year. For the first time in years, I am able to spend more time with my kids. I can make plans and know I am not going to suffer a seizure and be out of it for days, says Adam. The results of the first trial were life-changing: patients experienced about a 77 per cent reduction in seizures and extended periods without any seizures at all. This success has led to a second phase of the trial now being opened up to 70 more patients in Australia. Th MRTLE study could be a life-changer for 30% of people who can’t control their epilepsy with medication alone. If you’d like to learn more about the study, please visit www.mrtlestudy.com https://www.theage.com.au//world-first-epilepsy-treatment-

07.01.2022 Amanda walked 100km this October as part of our Walk for Epilepsy around Australia. Below, she shares what it was like to complete the Walk as someone living with epilepsy. Amanda is a Lived Experience Advocate for the Australian Epilepsy Project (AEP) at The Florey Institute of Neuroscience and Mental Health. The AEP is aiming to fund the necessary research and tools to create specialist hubs in Australia, with the hope of leading to faster diagnosis and better treatment fo...r people living with epilepsy. You can read more of Amanda’s story here: https://epilepsyproject.org.au//10/26/2020-walk-for-epile/ The Walk for Epilepsy site remains open for donations until next week. If you’re still waiting on friends and family, remind them that it’s not too late to donate.

07.01.2022 When Charlie got home, he could tell Mum and Dad were worried. They were always telling him to be careful, and watching over him. Charlie’s Mum had a lot of questions about epilepsy and how best to support Charlie, so the doctors at the hospital told her to give the Epilepsy Foundation a call. When on the phone, Mum spoke to one of our Epilepsy Support Workers. Charlie’s mum was able to talk about all of her fears and worries and the Epilepsy Support Worker was able to supp...ort her by giving her some information about epilepsy, risk management. They also helped her to develop an Epilepsy Management Plan (EMP) so that other people important to Charlie would know how to support him during a seizure. Charlie was glad because having an EMP seemed to help Mum and Dad relax. They sent his EMP to Charlie’s school and his grandparents, and Mum and Dad signed up for an Emergency Medication Management Plan course with the Epilepsy Foundation. If you’d like to find out more about what happens when you call our InfoLine, swipe right. This holiday season, we hope you’ll be able to give to the Epilepsy Foundation, so more kids with epilepsy have an epilepsy management plan. These plans are life-changing. When you give, kids just like Charlie receive the very best information, support and care from the team at the Epilepsy Foundation. Without you, children like Charlie may not receive the support they deserve. Please, help Charlie’s wish come true this Christmas. Donate online now by visiting our website at https://epilepsyfoundation.org.au/.

07.01.2022 It’s almost hereWalk for Epilepsy around Australia starts tomorrow! If you’ve signed up and set your kilometre target, you might be wondering how to track your kilometres. There are three easy ways to do so, and we’ve prepared this video to walk you through the different methods to do it. Happy walking!

06.01.2022 Did you know that Prince lived with epilepsy as a child? He shared his story in 2009, where he said "I used to have seizures when I was young. And my mother and father didn't know what to do or how to handle it, but they did the best they could with what little they had." We know that some families can relate to Prince’s experience Many parents tell us that they feel overwhelmed, disoriented and scared when their child first experiences a seizure. We want Mums and Dads acro...ss Australia to feel confident and supported, so our goal at the Epilepsy Foundation is to raise awareness and help people learn more about epilepsy If you’d like to find out more, check out our website or give our InfoLine a call on 1300 761 487

06.01.2022 Carly’s Story In June 2019, I started experiencing sudden seizures. I was having between 3-20 seizures a week. At first, my seizures were diagnosed as non-epileptic, but we pushed for further testing and another opinion, and it was discovered that I had idiopathic focal epilepsy. I have focal to bilateral tonic-clonic seizures and absence seizures. Once I was properly medicated, my seizures were somewhat under control for five months. In March 2020, I went into status ep...ilepticus and stopped breathing. Since then, I’ve been in status twice and two hospitalisations. About five weeks ago, I was put in a medically induced coma to stop my seizures. I had over 40 seizures in the space of 6 hours and couldn’t breathe on my own anymore. I’m lucky to be alive today with no serious complications, but the chances of it happening again are high. It’s scary how one minute I was having a coffee with friends then weeks later I woke up in the ICU with tubes everywhere. My family and I weren’t aware of the severity of status epilepticus. It’s something that is not regularly talked about, even in the doctor’s office. Even though the last 18 months have been difficult, I’ve grown a lot as a person and learnt so much about life and myself. My goal is to spread awareness about status epilepticus and epilepsy in general. As an adult, I’ve realised that there’s a lack of education about seizures and epilepsy in the workplace, social settings and even with medical professionals. I’m currently working and studying full-time whilst managing my seizures. I’m quite open about sharing my story online and at work in the hope that someone will take something away from it and also help reduce the stigma about epilepsy. Thank you Carly for sharing your story - please visit her Instagram page @carly_vs_seizures to hear more.

05.01.2022 Not long now, Walk for Epilepsy is just 2 weeks away! This year’s walk will be open to anyone and everyone Hosted virtually from October 1-25, you can choose to walk as much or as little as you like! Register, create a fundraising page and join us to help raise funds for those living with epilepsy Jump on the website now and get started at www.walkforepilepsy.com.au

05.01.2022 How has living with epilepsy impacted your quality of life? Researchers from the Australian Centre for Health Services Innovation at the QUT (Queensland University of Technology) are researching this important topic, including the effects of COVID19 on employment opportunities. They are currently looking for participants to join this critical research study - more info can be found below. If you’d like to get involved, it involves completing an online questionnaire taking less than 10 minutes. Click on the link to find out more: https://redcap.ihbi.qut.edu.au/surveys/?s=L4DPH7KYYJ

05.01.2022 Did you enjoy our webinar on epilepsy last Sunday night? We heard from two of Australia's leading epilepsy specialists, Professor Ingrid Scheffer and Dr Silvana Micallef. With a specific focus on families and children, these talks are designed to help answer some of your questions about epilepsy, and provide valuable insight into seizures, triggers, syndromes and neuropsychology. In case you missed it, or wanted the chance to go back and watch it again, we’ve uploaded both webinars for free on YouTube and our website - follow the link to check them out! https://epilepsyfoundation.org.au//epilepsy-specialist-s/

05.01.2022 While Purple Month is coming to an end, the conversation about epilepsy should carry on Thank you to every single one of you for raising awareness for epilepsy. #LOOKforepilepsy For more information about epilepsy and its treatment, speak to your doctor.... Sponsored by UCB Australia. The views expressed below are those of the individuals and do not necessarily reflect the views of UCB. Information relating to seizure types from Fisher et al 2017 Epilepsia, 58(4):522530

05.01.2022 What do you wish more people understood about epilepsy? What are some common questions you get asked when talking to people about epilepsy? Let us know in the comments below.

05.01.2022 Do you find your epilepsy affects your memory? On this week’s Living with Epilepsy Webinar, Ben and Allison Wilson-Powell discuss some of the practical strategies they use to help with memory in everyday life. From labels around the house to useful phone apps, they’ve got plenty of ways to make life easier.

05.01.2022 WHAT AN EFFORT! We’ve already raised more than $50,000 to help people living with epilepsy! The money raised so far will fund all kinds of services for people living with epilepsy, including support and advice, research and education. ... Together we can make an even bigger difference for people living with epilepsy. Join us as we Walk for Epilepsy around Australia this October. Find out more at walkforepilepsy.com.au.

04.01.2022 Will you be attending our virtual dinner next week? We’re going to celebrate the year that was, and talk about a rare genetic condition called SYNGAP1. You’ll hear from Danielle Williams, mum to two girls who live with SYNGAP1. Danielle will tell her daughter’s stories, who were two of the first people in Australia to be diagnosed with this rare genetic condition. Professor Steven Petrou, Director of the Florey and an expert in his field of rare epileptic encephalopathies, wi...ll present his latest research on SYNGAP1. We hope to see you there - register here: https://epilepsyfoundation.org.au//virtual-event-year-in-/

04.01.2022 Doctors tried everything but it just kept getting worse. Because of my seizures, I lost my job, my driver’s license, I was stuck at home all day.it was horrible. This is how Natalie describes living with refractory epilepsy. Having tried countless treatment options, she was at a loss - until she was referred to Professor Mark Cook, Head of Neurology, at St Vincent's Hospital Melbourne. From that meeting, Natalie was selected as the first person in the world to get a new ...therapy that delivers drug directly to the brain as part of a pioneering trial developed by Professor Cook and his team through ACMD, Australia’s first hospital-based biomedical engineering research centre. The implant allows AED medication to be absorbed directly into the brain, and avoids any previous barriers that come with taking the sodium valproate orally. As a result of the surgery, Natalie says, I haven’t had a seizure in two years and three months. Thanks to the success, the second phase of the trial has recently began across Australia. To hear more of Natalie’s story, head to the link below: https://www.youtube.com/watch?v=gxp0JIuF32I For more info you can visit the pre-screening website https://www.mrtlestudy.com

02.01.2022 What have you found helps you best? As part of #SelfCareSeptember, we’re sharing a few things you can do to help you reduce your risk of seizures. If you’d like to feel more confident about living with epilepsy, give our InfoLine a call on 1300 761 487.

01.01.2022 Want to work for the Epilepsy Foundation? Now’s your chance. We’re looking for two new members to join the Epilepsy Foundation and help us support more people living with epilepsy. Are you a people person? As an Operations Manager, you will develop relationships with key stakeholders across New South Wales and be responsible for promoting our services. The role will be based in Sydney, NSW.... Are you interested in supporting those living with epilepsy? As an Epilepsy Support worker, you will deliver professional support and services to individuals and families living with epilepsy. This role is based in Surrey Hills, Melbourne, but suitably qualified people in NSW may be considered to work from home. To find out more, go to https://epilepsyfoundation.org.au/about-us/work-with-us/

01.01.2022 Did you know that this stage of the seizure is called the ictal phase? It is during this time that intense electrical activity occurs in the brain Different people experience this phase in different ways. If you want to learn more about the different phases, give us a call on 1300 761 487 or check out our website.

01.01.2022 The countdown is on! There are only 7 days to go until we officially start this year’s Walk For Epilepsy. This October, we’re walking to raise awareness and funds for the people living with epilepsy. Our goal is to one day find a cure so that no more people have to unnecessarily die from their epilepsy. Thanks to your efforts and generous support, we’re able to fund research and development projects. To donate or register check out walkforepilepsy.com.au

01.01.2022 Did you see Melbourne shining purple last week? We were delighted to have the support of a number of major landmarks, including AAMI Park and Flinders Street Station, which turned purple to celebrate Purple Day. If you snapped your own photos, show us in the comments!

01.01.2022 Laura’s Story In March 2018, I suffered my first tonic-clonic seizure. At that time, I was misdiagnosed with convulsive syncope. After my second seizure one month later and in consideration of my family history of autoimmune disease, I was diagnosed with the rare GAD65 Autoimmune epilepsy. It has been an incredibly difficult journey since that time with ongoing seizures which have been catamenial in nature. At one point, I was having up to 40 seizures a month. I have trie...d multiple medications with limited success, and have also trialled IVIG with no benefit. Since starting a new treatment, I am finally getting some better seizure control and experiencing about 10 seizures a month instead of 40. My seizures now are complex partial and am hopeful of being seizure-free in the near future I regularly participate in the Walk for Epilepsy and this year raised over $1,500 for the Epilepsy Foundation of which I am very proud! I am hoping that my story will educate people on autoimmune epilepsy and encourage people to be tested for autoimmune types of epilepsy which will benefit them in hopefully being seizure-free someday. I want to encourage people to keep fighting. I am studying my PhD in Physiotherapy, despite my illness. My experience has shown me that strength doesn’t come from what you can do... it comes from overcoming the things you once thought you couldn’t. Thank you to Laura for sharing your story with us, and for helping raise awareness of epilepsy in Australia. If you’d like to share your story as well, message us directly.