October 16th: SUDEP Action Day

Wednesday, October 16, 2024

All Day Event

Virtual

October 16th is a day of international action, when families and advocates advance action to figure out the “why” of Sudden Unexpected Death in Epilepsy. The goals for this day are to encourage people with epilepsy to learn about SUDEP and their individual risk, motivate research, and to honor the lives lost to the most common form of death in epilepsy. This year’s theme is “Our Risk, Our Rights,” which emphasizes the community’s right to access vital, lifesaving information – empowering individuals and families by encouraging critical conversations about the risks we face and the rights we have to be informed. The theme also gives beavered families a platform to have their questions answered and the cause of their loved one’s death acknowledged.

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Created by the UK-based nonprofit SUDEP Action in 2014, SUDEP Action day is now an annual and international campaign devoted to raising awareness about Sudden Unexpected Death in Epilepsy around the world and inspiring action to help save lives. As our partners at SUDEP Action write, “The bereaved also have a right to have their questions answered and cause of their loved one’s death recognized, so lessons are learnt and future lives can be saved. Many who have lost loved ones to epilepsy wish that they were told about the risks.”

In memory of Danny Stanton and all the lives to SUDEP, Danny Did Foundation is proud to join the American Epilepsy Society, CURE Epilepsy, the Epilepsy Foundation and Partners Against Mortality in Epilepsy (PAME) as U.S.-based contributors to this campaign of action.

SUDEP Action Day is also a time when epilepsy organizations across the world come together with one voice and one united aim. We must encourage every person with epilepsy, their families and health professionals to be more aware of risks and to take an active role in discussing, reviewing and reducing them.

• 2024 Action Day Partner: We are proud to have Catalyst Pharmaceuticals as our partner for SUDEP Action Day. Catalyst is a biopharmaceutical company committed to improving the lives of patients with rare diseases. With a proven track record of bringing life-changing treatments to the market, they focus on in-licensing, commercializing, and developing innovative therapies. Guided by a deep commitment to patient care, Catalyst prioritizes accessibility, ensuring patients receive the care they need through a suite of support services designed to provide seamless access and ongoing assistance. Learn more online here. 

 

To support our DDF SUDEP Action Day fundraiser, click here.

What is the Goal of SUDEP Action Day?

• • Encourage people with epilepsy to learn about SUDEP and their individual risk

• • Show what is currently being done to address SUDEP

• • Promote ways people can manage their epilepsy to reduce their risk

• • Highlight the need for more research into SUDEP to help save lives

• • Raise awareness of SUDEP amongst the general public

• • Honor the lives of all those who have died from the condition

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SUDEP Action Day: Asking “Why”  

SUDEP Action is inviting you to ask these questions about SUDEP to get answers, inspire action, and highlight what more needs to be done:

• • Why don’t more people know about SUDEP?

• • Why is talking about SUDEP important?

• • Why should people with epilepsy and their clinicians know about SUDEP risks?

• • Why have you taken part in fundraising/awareness events to help shine a light on SUDEP and epilepsy-related deaths?

• • Why is it important to you that others get involved in SUDEP Action Day?

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How Can I Participate in SUDEP Action Day?

1. • Change your Facebook or Twitter cover to support SUDEP Action Day. 

1. • Join the epilepsy community to:
     1. • Post a picture of yourself holding our SUDEP Action Infographic with the hashtag #SUDEPActionDay2024
     1. • Share pictures of your involvement in SUDEP Action Day.
     1. • Use the campaign hashtags #SUDEPActionDay2024, #OurRisksOurRights and #MySafetyMatters.

1. • Spot opportunities to raise local awareness and take action to prompt change:
     1. • Share our SUDEP resources or host a talk for your community group.
     1. • Post the infographic or poster on notice boards, in newsletters, free local papers, or shop windows.

1. • Contribute to an epilepsy death registry if you have lost someone to SUDEP or an epilepsy-related death. You can also commemorate your loved one by sharing their photo and name on Facebook and Twitter with the hashtag #SUDEPActionDay2024.

1. • Tell someone why they should know about SUDEP and support SUDEP Action Day. Share your story. Tell them why knowing about SUDEP and epilepsy is important for raising awareness and encourage others to take action.

1. • Are you a healthcare provider? Get more information on SUDEP.

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Things You Can Do to Reduce Your SUDEP Risk

• • SUDEP stands for sudden unexpected death in epilepsy. Learn more in this SUDEP FAQ.

• • SUDEP is linked to seizures; the best way to reduce that risk is to have as few seizures as possible. Find tips for managing epilepsy and seizures.

• • Take your medication regularly and reliably to get better seizure control. 

• • Speak to your doctor before making any changes to your medication.

• • Make sure you have regular reviews. Find tips for talking with your healthcare team.

• • Discuss any lifestyle changes with your doctor.

• • Avoid excess alcohol consumption and using recreational drugs for better seizure control. Learn about preventing SUDEP.

• • Tell your doctor if your seizures have changed.

• • If your medication isn’t working, don’t settle for continued seizures. Ask your doctor what other options there might be. Learn about epilepsy treatments. 

• • The risk of SUDEP varies from person to person. It is important you discuss your risk with your health professionals. Find tips for talking about SUDEP.