Phil Gattone on #AimForZero


The Epilepsy Foundation SUDEP Institute, comprised of leading epileptologists and epilepsy organizations, is urging people living with epilepsy and their caregivers to aim for zero sudden deaths from epilepsy and seizures by adopting and practicing four key actions:

  1. Take medication as prescribed
  2. Get enough sleep
  3. Limit alcohol
  4. Strive to stop seizures

Social media platforms offer people living with epilepsy and the people caring for them opportunities and forums to discuss important issues about how to aim for a life without seizures and reduce their risks for sudden unexpected death in epilepsy (SUDEP).

The Epilepsy Foundation recognizes that for 3 out of 10 people living with epilepsy, a life without seizures is not within reach right now. However, adopting the four actionable behaviors recommended here, and working towards the best seizure control possible, may help reduce the risk of SUDEP in people living with epilepsy.

Join the #AimForZero Awareness Campaign

  • Talking about how you #AimForZero with your family, friends, co-workers, neighbors, and community leaders and asking them for any support you may need.
  • Talking to your health care providers about how you can #AimForZero seizures and reduce your risk for SUDEP.
  • Writing about it on any appropriate list serves you belong to.
  • Using the #AimForZero messages provided below in your social media accounts, blog, or community newsletter to spread awareness among your family, friends, and followers.
  • Transitioning into adulthood and taking on more responsibilities while managing a health condition can feel overwhelming. Our series of “#Adulting with Epilepsy” messages shares strategies and tips for young adults and millennials living with epilepsy who face these challenges. Share our #Adulting messages, which focus on seizure-management behaviors for a millenial audience.
Together we can reduce the risk of seizures and sudden death in epilepsy and save lives.

Sample Messages for Longer-form Social Media Platforms

(Such as Facebook, Google Plus, and LinkedIn)

  • 1 out of every 1,000 adults living with epilepsy die from sudden unexpected death in epilepsy each year. Join the SUDEP Institute in encouraging people to help #AimForZero deaths from seizures. Learn more at epilepsy.com/aimforzero.
  • These four actions may reduce your risk of SUDEP: 1) take medication as prescribed; 2) get enough sleep; 3) limit alcohol consumption; and 4) strive to stop seizures. Get started learning how to #AimForZero risks at epilepsy.com/aimforzero.
  • When people with epilepsy and their caregivers are empowered with information to understand the risk of seizures and SUDEP, they can take action to reduce risk of harm. Share and encourage others to #AimForZero risks from seizures. epilepsy.com/aimforzero/about-sudep
  • Living with the best seizure control possible and aiming for zero seizures should be a goal all people with epilepsy and their health care providers strive to reach. Learn more at epilepsy.com/aimforzero/seizure-control. #AimForZero
  • When medicine is missed or taken irregularly, people are at greater risk of having seizures. Find help to #AimForZero missed medications at epilepsy.com/aimforzero/take-medication.
  • Research shows that there is a significant relationship between sleep deprivation and seizures in people with epilepsy. Find help to #AimForZero lost sleep at epilepsy.com/aimforzero/get-enough-sleep.
  • All people with epilepsy are at a high risk of seizures after drinking three or more alcoholic beverages. Limit Alcohol. #AimForZero Seizures epilepsy.com/aimforzero/limit-alcohol
  • Regardless of one’s current level of seizure control, there are many proactive steps people living with epilepsy can take once they have committed to exploring all options to stop seizures. Learn how you can strive to #AimForZero seizures at epilepsy.com/aimforzero/strive-stop-seizures.
  • You can strive to #AimForZero seizures by exploring all treatment options, including new and add-on medications, surgery, devices, and dietary therapy, with an epilepsy specialist. Learn more at epilepsy.com/aimforzero/strive-stop-seizures.
  • Attention health care providers: in a recent survey, 40% of people living with epilepsy and nearly 50% of caregivers said learning more about SUDEP could make a difference in how they approach seizure control. Talking about SUDEP can save lives! Help the people you care for #AimForZero. Find help starting the conversation at epilepsy.com/aimforzero/for-professionals.

#Adulting with Epilepsy

  • We're sharing how #adulting with epilepsy can help you #AimForZero seizures and reduce your risk for SUDEP. #Adulting tips include: taking your medications on time, getting plenty of sleep, limiting your consumption of alcohol, and speaking with your epileptologist about all treatment options. bit.ly/2dQBoWv
  • Want to teach your friends your new #adulting ways? Share messages from our social media guide to encourage more people to #AimForZero during National Epilepsy Awareness Month. bit.ly/2eaUkC2
  • Strive to #AimForZero seizures by tracking your seizure triggers by using My Seizure Diary. Identifying your triggers can help you reduce your #SUDEP risk and make #adulting while living with epilepsy that much easier. epilepsy.com/get-help/my-epilepsy-diary
  • The ultimate #adulting? Giving back! Talk to your doctor about being part of the solution for others and participate in a clinical trial. epilepsy.com/aimforzero/strive-stop-seizures

Sample Messages for Character-limited or Short-form Social Media Platforms

(Such as Twitter or Instagram)

#Adulting with Epilepsy

  • #Adulting is setting a phone alarm to remember to take your medicine. #AimForZero http://bit.ly/2dY8155
  • #TFW your friends have a hangover but you don’t because you didn’t drink at the party. #Adulting Limit Alcohol #AimForZero Seizures http://bit.ly/2dAzf2z
  • Sleeping enough to #AimForZero seizures & avoiding hitting the snooze button = #Adulting! Learn more: http://bit.ly/2dyVIRc
  • #AimForZero has four key #Adulting tips to help you manage your epilepsy like an adult & reduce your risk for SUDEP http://bit.ly/2dQBoWv
  • Are your seizures still uncontrolled? Your #adulting task of the day: Schedule an appt with an epileptologist. http://bit.ly/1JvahMX
  • Need more help in #adulting while living with epilepsy? Sign up for Texting 4 Control to get helpful tips! http://bit.ly/1wyYEP7
Authored By: 
The Epilepsy Foundation SUDEP Institute
Authored Date: 
Thursday, September 1, 2016