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Jed Stanford

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My target 100 kms

I’m taking part in Walk for Epilepsy because...

I want to raise money and make a difference for people living with epilepsy like my big brother Archie. Please help me by giving whatever you can using the 'Donate' button. The more people that know about the walk, the greater the impact, so please also spread the word by sharing our page with your friends and family. Thank you in advance for your generosity, it means a lot!

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$5,000

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My Updates

Day 24

Sunday 25th Oct
Over the past few days, we've shared the 27 recommendations from the Senate Inquiry into Epilepsy in Australia. Different recommendations focused on different things, but they all pointed to the same reality: 💜 Better awareness and education 💜 Faster access to diagnosis and treatment 💜 More epilepsy specialists and nurses 💜 More support for families and carers 💜 Better access to research and clinical trials 💜 Improved NDIS support 💜 Better care regardless of where you live 💜 More investment in understanding epilepsy and its impact What struck us most is that these recommendations recognise something families already know. Epilepsy isn't just about seizures. It's about the appointments, the uncertainty, the constant learning, the support systems, the mental load, the research, the advocacy and the hope for better treatments in the future. For our family, reading through all 27 recommendations has been reassuring in one way: it shows that these challenges are being recognised and that there are people fighting for change. But there is still a long way to go. That's why we're fundraising. 💜 Because behind every recommendation is a real person, a real child and a real family trying to navigate life with epilepsy. Thank you to everyone who has followed along, shared a post, donated or taken the time to learn more about epilepsy 💜

Day 23

Saturday 24th Oct
Senate inquiry recommendations 25-27: 💜 25. Better Support for People Who Cannot Drive Because of Epilepsy — recognising the impact losing the ability to drive can have on independence, employment, education and everyday life, and improving access to practical transport support. For Archie, not being able to drive has been one of the hardest things about living with epilepsy. At his age, driving represents independence, freedom and the ability to do the things his friends are doing. Having that taken away is another reminder of how much epilepsy can impact a young person's life, beyond the seizures themselves. 💜 26. Better Support for First Nations Families — ensuring Aboriginal and Torres Strait Islander people and families can access culturally safe, appropriate epilepsy care and support. 💜 27. Better Support for Culturally and Linguistically Diverse Families — improving access to information, services and support that take language and cultural needs into account, so families can better understand epilepsy and navigate the healthcare system. 💜 Everyone deserves access to epilepsy care that understands their circumstances, respects their needs and supports them to live as fully as possible. These final recommendations remind us that improving epilepsy care means looking at the whole person and the barriers they face, not just their seizures. The recommendations provide a roadmap for change. Now, the focus must turn to implementation, so that people living with epilepsy and their families can see real improvements in their everyday lives. Better understanding. Fairer access. Better support. A better future for everyone affected by epilepsy. 💜

Day 22

Saturday 24th Oct
It was a warm one tonight so had to get a Cookie Monster ice cream half way through! Senate inquiry recommendations 22-24: 💜 22. Make the NDIS Work Better for People with Epilepsy — improving recognition of the impact epilepsy can have on daily life and ensuring people with significant support needs can access the assistance they require. 💜 23. Better Travel Assistance for Specialist Care — helping people access financial and practical support to travel for specialist appointments and treatment, particularly when the expertise they need isn't available locally. 💜 24. Protect and Improve Access to Telehealth — ensuring people can continue accessing specialist advice and follow-up care remotely when appropriate, reducing the need for lengthy and costly travel. Access to care shouldn't depend on your postcode, your financial circumstances or your ability to navigate complex support systems. Epilepsy can have a significant impact on a person's ability to work, study, drive and manage everyday life. Yet those challenges aren't always visible or fully understood. For families living outside major cities, travelling long distances for specialist care can add another layer of stress, expense and disruption. 💜 Everyone living with epilepsy deserves fair access to the care and support they need

Day 21

Wednesday 21st Oct
National senate inquiry recommendations 18-21: 💜 18. Epilepsy Nurses and Navigators — improving access to specialist nurses and care navigators who can help people understand their condition, coordinate care and find the right services. 💜 19. Peer Support - Support for Epilepsy Advocacy Organisations — recognising the important role epilepsy organisations play in advocating for people living with epilepsy, raising awareness, providing information and connecting individuals and families with vital support. 💜 20. Better Access to Palliative Care — ensuring people with epilepsy who have complex or life-limiting needs can access appropriate palliative care and support for themselves and their families. 💜 21. Psychological Support — improving access to mental health support for people living with epilepsy and their families. The emotional impact of epilepsy can be significant, and that support matters. Epilepsy affects so much more than physical health. It can impact emotional wellbeing, family life and the ability to navigate everyday challenges. 💜 People living with epilepsy and their families deserve to feel supported, heard and advocated for — not left to navigate the journey alone.

Day 20

Wednesday 21st Oct
Getting very very tired but still getting it done every day! Only a few days left. National senate inquiry recommendations 15-17: 💜 15. Create a National Epilepsy Registry — recording epilepsy diagnoses across Australia to give us a clearer picture of how many people are affected, the types of epilepsy people experience and where gaps in care exist. Better data means we can better understand the scale of epilepsy in Australia and plan services to meet the needs of those affected. 💜 16. Dedicated Funding for Epilepsy Research — investing in research to improve treatments, find answers and create better outcomes for people living with epilepsy. 💜 17. Support from the Moment of Diagnosis — ensuring people and families receive information, guidance and access to support from the very beginning, rather than having to navigate an often overwhelming journey alone. 💜 We can't improve what we don't fully understand. Better national data, dedicated research funding and support from diagnosis are important steps towards better outcomes for everyone affected by epilepsy.

Day 19

Wednesday 21st Oct
Senate inquiry recommendations 12-14: 💜 12. Better care for women with epilepsy — ensuring women receive appropriate advice and support when planning a pregnancy, during pregnancy and while breastfeeding. 💜 13. Better healthcare for women with chronic conditions — providing the right care, advice and support before, during and after pregnancy. 💜 14. Better access to epilepsy research and clinical trials — helping advance knowledge, improve treatments and create better outcomes for people living with epilepsy. We can only imagine how challenging it must be to navigate pregnancy while living with epilepsy, balancing seizure management, medication decisions and the health of both mum and baby. Having access to the right specialists, advice and support is so important. Research is equally vital. For those whose seizures remain uncontrolled, better treatment options could be life-changing. 💜 Every woman deserves informed care, every family deserves support, and everyone living with epilepsy deserves hope for better treatments.

Day 18

Sunday 18th Oct
Senate inquiry recommendations 8 - 11: 💜 8. Comprehensive Epilepsy Centres in Every Australian Jurisdiction Every Australian state and territory should have access to a comprehensive epilepsy centre, providing specialised expertise and coordinated care for people with complex epilepsy. Where you live should not determine the level of care you can access. 💜 9. Properly Fund the Centres We Already Have Establishing specialist centres is only part of the solution. The centres we already have need appropriate funding and resources to deliver the care, expertise and services that people living with epilepsy deserve. 💜 10. National Standards for Comprehensive Epilepsy Centres Consistent national standards would help ensure comprehensive epilepsy centres deliver high-quality care and meet clear expectations. Families should be able to trust that they are receiving appropriate specialist care, regardless of which centre they attend. 💜 11. Better Access to Subsidised Anti-Seizure Medications Access to medication should not be an unnecessary financial burden. Better access to subsidised anti-seizure medications can help people obtain the treatment they need to manage their epilepsy. Specialist care must be accessible, properly funded and supported by consistent national standards. Thank you for continuing to support Jed’s Walk for Epilepsy. Every donation, share and conversation helps us raise awareness and work towards a better future for people with epilepsy and their families.

Day 17

Sunday 18th Oct
Continuing on with the recommendations from the Australian Senate inquiry into epilepsy, focusing on four important areas that could make a real difference to people living with epilepsy and their families. 💜 4. Consistent Epilepsy Care Pathways People living with epilepsy should have clear pathways to diagnosis, specialist care and appropriate treatment. Families need to know where to turn and what steps to take, without having to navigate a complex healthcare system on their own. 💜 5. Better Funding for EEGs EEGs are an important tool in diagnosing and assessing epilepsy. Better access and funding can help people receive the investigations they need in a timely manner, rather than facing unnecessary delays. 💜 6. Better Access to Neuroimaging Brain imaging can play a vital role in understanding the cause of seizures and determining appropriate treatment options. Timely access to the right scans can be particularly important for people whose seizures are difficult to control. 💜 7. Earlier and Broader Genetic Testing For some people, genetic testing can help identify the underlying cause of their epilepsy. Earlier and broader access to testing may help families get answers, guide treatment decisions and better understand what the future may hold. Because getting a diagnosis is only part of the journey. People also need access to the right tests, the right specialists and a clear pathway to appropriate treatment. For our family, this is incredibly personal. We know how exhausting and distressing the process can be when you're trying to find answers and secure the best possible care for your child. We know how much uncertainty families carry while waiting for investigations, specialist opinions and decisions about what comes next. No family should have to fight so hard to access the care their child needs. 💜 Every delay matters when you're waiting for answers. Every barrier matters when you're fighting for your child. We need to see these recommendations translate into meaningful action so that future families have better access to diagnosis, specialist care and treatment. Thank you for continuing to support Jed’s Walk for Epilepsy. Every share, donation and conversation helps us raise awareness and push for a better future for people living with epilepsy.

Day16

Saturday 17th Oct
The first 3 recommendations from the senate inquiry are: 💜 1. A National Epilepsy Action Plan A coordinated national plan to improve epilepsy care and support across Australia, address gaps in the system and help ensure people living with epilepsy receive the care they need. 💜 2. Better Awareness and Education Improving understanding of epilepsy, reducing stigma and educating the community about the condition, including how to recognise and respond to seizures. 💜 3. More Epilepsy Expertise Improving access to healthcare professionals with specialist epilepsy knowledge, so people can receive appropriate advice, treatment and ongoing care when they need it. For our family, these issues are personal. We know how exhausting it can be to navigate the healthcare system and advocate for the care your child needs. We want to see a future where families have better access to support, answers and appropriate treatment without having to fight so hard for it. These recommendations are an important starting point. Now we need to see meaningful action! Thank you for supporting Jed’s Walk for Epilepsy and helping us make a difference!

Day 15

Friday 16th Oct
In September this year, the Australian Senate handed down its report into epilepsy in Australia, making 27 recommendations aimed at improving epilepsy care and support across the country. The report acknowledges what so many people living with epilepsy, their families and carers have known for far too long: epilepsy is about so much more than seizures. It’s about access to timely diagnosis, specialist care and appropriate treatment. It’s about support for families navigating an incredibly complex healthcare system. It’s about awareness, education, research and making sure people living with epilepsy aren’t left to fight for the care they need. The recommendations are an important step forward, including calls for a National Epilepsy Action Plan and better access to specialist services and support. But recommendations alone aren't enough. We need to see meaningful action and real change for the people and families living this reality every day. For our family, this is deeply personal. We know firsthand how exhausting, frightening and heartbreaking the journey with epilepsy can be. We know what it feels like to search for answers, navigate the healthcare system and advocate relentlessly for your child to access the treatment they need. No family should have to fight this hard to get the right care. And this is exactly why Jed’s Walk for Epilepsy matters. Every dollar raised helps support the work needed to improve epilepsy awareness, care, research and support for those affected. We want to help create a future where families receive the right information, the right support and access to appropriate treatment without having to navigate the same difficult journey so many families experience today. We can’t change what our family has been through, but we can help fight for a better future for others. 💜 For everyone living with epilepsy. For every family standing beside them. And for the families who will receive an epilepsy diagnosis in the future Please consider supporting Jed’s Walk for Epilepsy by donating or sharing our fundraising page. Every contribution, no matter how big or small, helps us keep moving towards a future where epilepsy is better understood, better supported and better treated. Thank you to everyone who has supported us so far. It means more than you know!

Day 14

Wednesday 14th Oct
Epilepsy is more than seizures. 1 in 3 people living with epilepsy experience mental health challenges, including anxiety and depression. Epilepsy can affect so much more than physical health. The uncertainty of when the next seizure might happen, medication side effects, loss of independence and the impact on school, friendships and everyday life can take a huge toll.

Day 13

Tuesday 13th Oct
One of the hardest things about epilepsy is that getting help is often a battle in itself. Families can face long waits just to see a neurologist, followed by months or even years of tests, appointments and uncertainty before getting a diagnosis. And even once epilepsy is diagnosed, finding the right medication can be a long and difficult process, with no guarantee the first, second or even third medication will work. Behind every statistic is a child and a family trying to navigate an incredibly challenging journey, often while living with the constant fear of seizures. No family should have to fight so hard to access the care and support their child needs. Every dollar raised through Jed’s Walk for Epilepsy is a step towards better support, greater awareness and improved access to care, so that future families don't have to fight as hard as we have had to, to get the help their child needs. 💜

Day 12

Tuesday 13th Oct
Seizures look different depending on where they start in the brain. They fall into three main categories: • Focal Seizures (Partial): Start in just one part of the brain. A person might stay fully conscious but feel strange sensations (Focal Aware), or they may look confused and stare blankly (Focal Impaired Awareness). • Generalized Seizures: Involve both sides of the brain at once. This includes Absence seizures (brief 10-second staring spells) and Tonic-Clonic seizures (the classic convulsive seizure with muscle stiffening and shaking). • Unknown Onset: Used when a seizure is unwitnessed or it is not yet clear where the electrical activity started. Archie has both focal impacted and tonic-clonic seizures. Please keep donating, even $5 can help. I’m nearly half way and my legs are getting tired but I will continue as I know how hard it is to live with epilepsy.

Day 11

Sunday 11th Oct
A walk along the beach with Dad & Ernie today. Epilepsy is more than seizures. For many people with epilepsy, everyday life means relying heavily on medication to control seizures. Taking it consistently and on time is incredibly important and missing doses can increase the risk of a seizure occurring.

Day 10

Saturday 10th Oct
Was tough walking today, I’m tired. But I did catch 9 crabs! Epilepsy is more than seizures. It’s mood swings, anxiety and sometimes depression.

Day 9

Friday 9th Oct
Epilepsy is more than seizures. Behind every person with epilepsy is often a family carrying their own invisible burden: the fear of the next seizure, worry about safety and the hope for seizure free days.

Day 8

Friday 9th Oct
Epilepsy is more than seizures. It’s very unpredictable. Many people live with the constant uncertainty of not knowing when their next seizure will happen. It could happen at school, at work, in a public place, while simply enjoying a normal day.

Day 7

Thursday 8th Oct
Epilepsy is more than seizures. SUDEP stands for sudden death by epilepsy and people with drug resistant epilepsy have a 17% risk of dying from epilepsy.

Day 6

Thursday 8th Oct
Epilepsy is more than seizures. Around 30% of people diagnosed with epilepsy have what is called drug resistant epilepsy and medication doesn’t stop the seizures. It can be a life long condition for many people.

Day 5

Tuesday 6th Oct
Spent most of the day in the car but managed a walk on the treadmill when we got home. Epilepsy is more than seizures. The anti seizure medication can make you feel bad and have no energy with side effects like blurred vision.

Day 4

Sunday 4th Oct
Another day another hill! Epilepsy is more than seizures. You can’t ride bikes on busy roads.

Day 3

Saturday 3rd Oct
Jed put in a massive effort today by climbing Rawnsley Bluff while we are staying at Rawnsley Park for the weekend. A four hour round trip. Epilepsy is more than just seizures. Swimming is dangerous which is not fair for kids growing up.

Day 1

Thursday 1st Oct
Epilepsy is more than seizures. Archie isn’t allowed to drive until he is 12 month seizure free.

Thank you to my Sponsors

$106.75

S+g Burke

$106.75

Wendy Partington

Great idea Jed. Keep walking 🚶

$106.75

Jed Stanford

$106.75

The Albrecht Family

Amazing job Jed! Keep up the great work 😊

$106.75

Poppy

$106.75

Grandma

$75.68

Bails

Jeddo little ledgend can’t wait for you to start walking

$66.73

Earl Family

Awesome effort Jed!!

$66.73

Max,pat,vance, Isaac

$66.73

Eva S

Hi Jed!

$66.73

Peter & Kerryn Cook

Well done Jed!

$66.73

Nexon Asia Pacific & Ucb

Nexon Asia Pacific and UCB have matched this donation.

$55.95

Steve Pearce

$55.95

Lisa Stanford

Go Jeddy!! 🏃‍♂️‍➡️🏃‍♂️‍➡️

$55.95

Nexon Asia Pacific & Ucb

Nexon Asia Pacific and UCB have matched this donation.

$55.95

Evie, Finn & Stu

Well done Jed

$55.95

Nexon Asia Pacific & Ucb

Nexon Asia Pacific and UCB have matched this donation.

$55.95

Drew Morrison

Keep up the great work Jed

$55.95

Bella Dart

$50

Jo Ussing

Well done Jed

$50

Indie Busby

$50

Westthorp Fam

Well done Jed (and Emily accompanying). What an amazing advocate and support. Smash it bud.

$34.40

Andrew Steohan

Well done!! Keep charging!

$34.40

Anonymous

❤️

$34.40

Jamie Cooter

Love that your doing this bud, keep it up Jeddy!

$34.40

Seanna Stanford

$34.40

Alli Konig

What an awesome effort and important cause!

$34.40

Carly Burgemeister

$30

Louise Carslake

Well done Jed!

$26.36

The Kellys

$26.36

Nexon Asia Pacific & Ucb

Nexon Asia Pacific and UCB have matched this donation.

$23.81

Cathy Arnst

Well done! Keep going for this worthy cause.

$23.81

Tamara Jennings

Well done on taking this challenge on. Good luck!

$20

Anonymous

$20

Temara Smith

$20

Sarah Jones

Good luck Jed!

$11.92

Amelia Hawkins

$6.20

Tyler Mead

jeddo u little legend