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Advancing Awareness of Epilepsy & Sudden Unexpected Death in Epilepsy (SUDEP)

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SUDEP Action Day

Wednesday, October 23, 2019
All Day Event

October 23rd 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 advance awareness about SUDEP, to encourage people with epilepsy to learn about SUDEP and their individual risk, and to honor the lives lost to the most common form of death in epilepsy.

Created by the UK-based nonprofit SUDEP Action, SUDEP Action day is devoted to raising awareness about Sudden Unexpected Death in Epilepsy around the world and inspiring action to help save lives. In memory of Danny Stanton and all the lives to SUDEP, Danny Did Foundation is proud to be a partner to this campaign of action.

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

SUDEP Action Day Theme: “Why”  

This year, 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?

How Can I Participate in SUDEP Action Day?

  1. Change your Facebook or Twitter cover to support SUDEP Action Day. 
  2. Join the epilepsy community in asking why:
    1. Share the questions listed above and the #DareTo Say SUDEP Infographic and more resources. Post a picture of you holding either the infographic or SUDEP Action Day poster with the hashtag #SUDEPActionDay2019.
    2. Share pictures of your involvement in SUDEP Action Day.
    3. Use the campaign hashtags #SUDEPActionDay2019, #5forepilepsysafety and #EndSUDEP.
  3. 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.
    2. Post the infographic or poster on notice boards, in newsletters, free local papers, or shop windows.
    3. Bring materials to local events, like carnivals, community fairs, and sporting events. 
  4. 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 #SUDEPActionDay2019.
  5. 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.
  6. Are you a healthcare provider? Get more information on SUDEP.

Things You Can Do to Reduce Your SUDEP Risk



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Danny Did.