Turning the Tragedy of SUDEP into Hope: The Story of the Joanna Sophia Foundation

SUDEP, or sudden unexpected death in epilepsy, is a rare but devastating outcome that can occur in epilepsy. Despite efforts to raise awareness of SUDEP, too many people and families impacted by epilepsy are not made aware of the risk of SUDEP and what can be done to minimize those risks. Wednesday, October 15th is SUDEP Action Day, a day to to raise awareness, share knowledge, and promote ways that those impacted by epilepsy can reduce the risk of SUDEP. In honor of SUDEP Action Day, we speak with Maria Teresa Ioannou who tragically lost her nine-year-old daughter Joanna Sophia to SUDEP in 2018.

Joanna Sophia Ioannou was diagnosed with epilepsy at nine months old and was prescribed Keppra to control her seizures. Following a period of seizure freedom, Joanna was weaned off the Keppra and remained seizure-free for four years. However, the seizures returned as Joanna approached puberty and she was put back on Keppra at age nine. Despite being well-controlled, Joanna experienced some nighttime seizures, which put her at an increased risk for SUDEP. However, Joanna’s parents had never heard of SUDEP. Only after Joanna’s tragic and shocking passing in November 2018 did her parents learn about SUDEP. As the family mourned and struggled to understand what had happened to their daughter, they resolved to create something positive out of their painful loss. The result is the Joanna Sophia Foundation, an organization whose mission is to advance public awareness of epilepsy and the risk of SUDEP as well as help support families impacted by epilepsy.

Maria Teresa Ioannou shares her memories of Joanna and details her daugther’s epilepsy journey. She expresses her conflicting emotions around the subject of SUDEP disclosure, and explains how the Ioannou family decided to create the Joanna Sophia Foundation to honor their daughter’s memory. She also describes the amazing annual “Fun Run” that the foundation has organized in their Queens neighborhood and details how that has grown to include several international events aimed at raising epilepsy awareness, helping families impacted by epilepsy, and supporting epilepsy research.

ABOUT CURE EPILEPSY
CURE Epilepsy is the leading, non-governmental funder of epilepsy research. Since its inception in 1998, CURE Epilepsy has raised more than $100 million to fund epilepsy research and other initiatives that will lead the way to cures for the epilepsies. CURE Epilepsy funds grants for young and established investigators and to–date has awarded more than 300 cutting-edge projects in 18 countries around the world. Our mission is to fund breakthrough research that will transform the lives of people living with epilepsy as we lead the search for a cure.

LEARN MORE ABOUT EPILEPSY
Visit the “Understanding Epilepsy” section of CURE Epilepsy’s website:
https://www.cureepilepsy.org/for-pati...

STAY CONNECTED WITH CURE EPILEPSY
Sign up for our newsletter for the latest in epilepsy research news: https://www.cureepilepsy.org/subscribe/
Follow us on Facebook:   / cureforepilepsy  
Follow us on Twitter:   / cureepilepsy  
Follow us on Instagram:   / cureepilepsy  

INCREASE YOUR IMPACT
Share your story: https://www.cureepilepsy.org/personal...
Help us find a cure: https://www.cureepilepsy.org/get-invo...