We hope people from around the world get involved in SUDEP Action Day 2023.

You can play a vital role in making sure things change for the better – so more people know about #SUDEP & epilepsy risks, and so more people with epilepsy live well, & safely, with the condition.

Take part in one or more of the below ideas and join us & others from around the world this SUDEP Action Day.

Don’t forget to use our Facebook event page to share your ideas, images and support others who are getting involved.

We look forward to you joining us this year!

This year's theme (2023) - #mysafetymatters

As leaders in SUDEP and epilepsy deaths for over 25 years, SUDEP Action know the topic of SUDEP raises questions. But SUDEP Action Day is here to help people take positive steps towards reducing epilepsy risks.

Not everyone with epilepsy is aware of or told about SUDEP (Sudden Unexpected Death In Epilepsy) and epilepsy risks, which can put them in danger of worsening seizures, injury or of dying prematurely. Some health professionals worry that discussing these risks could frighten their patients. But these harms can be prevented for many people with epilepsy; and openly discussing these risks allows them to make informed choices about treatment and lifestyle and helps them take steps to reduce any risks.

People with epilepsy and their families WANT to be told about SUDEP and epilepsy risks. Many bereaved families were NOT told about SUDEP & wish that this vital information had been shared as it might have saved their loved one’s life.

Use our hashtag #mysafetymatters so that every person with epilepsy, their families and health professional are not only aware of these risks (which can lead to death if ignored) but are able to take an active role in discussing, reviewing and reducing them.

With information there’s conversation. As a growing community we need to encourage  #mysafetymatters and raise much needed awareness which could help people with epilepsy around the world live safely and help save lives!

How you can get involved with #mysafetymatters:

In just a few simple actions, you can make a real difference to others this SUDEP Action Day!

Quick ways to get involved with #mysafetymatters:

1. Liking, share or retweet our social media posts on the day to help spread our key messages worldwide. Use the hashtags – #SUDEPActionDay2023 and/or #mysafetymatters – Don’t forget to change your social media profile picture to the event logo! (SUDEP Action Day messages will be shared via the SUDEP Action social media accounts – making them easy to share online).

2. Pledge your support by clicking ‘attending’ on the SUDEP Action Day Facebook event page and don’t forget to share with us on social media a photo of your wearing orange on the day! Tangerine socks, Neon orange nail-varnish or a bright orange wig – grab attention and get people talking about SUDEP Action Day.

If you have a little more time to support #mysafetymatters:

  1. Write to your local health professionals to check they communicate about SUDEP with their epilepsy patients. If they don’t, encourage them that epilepsy risk communication is a priority and we need to #mysafetymatters. You can download a template letter here.
  2. Encourage your local policy makers to support SUDEP Action Day – contact them ahead of the day and ask them to show their support for #mysafetymatters (don’t forget to say why it is important to you!) – See here for resources to help.
  3. Take part in the SUDEP Action Day My Way to 5k event – however you complete it, & whoever you complete it with, could you raise vital awareness in your local area? Get some inspiration here.

Could you organise a SUDEP Action Day event – at work, school, with your club or with family and friends?
Help raise awareness of epilepsy and its risks and show why we need to express #mysafetymatters in the conversation about SUDEP.

Why not ask:

– Local newsletters, notice boards or newspapers

– Businesses

– Schools, Colleges, Universities

– or local groups such as sports clubs, choirs, dance classes

Don’t forget – However you plan on getting involved this SUDEP Action Day, please let us know what your plans are!
Either via social media or email us here – we’d love to know how you’re helping people around the world.

Don’t forget, you can take part in a special MyWayto5K event throughout October to mark SUDEP Action Day.

Walk, run, cycle, scoot, hike, climb, on the Day, or over a few days in October to mark the day – however you choose to reach your 5K, together we will be remembering and raising vital awareness to help save lives.