The NORSE Institute: A Mother’s Loss Drives Awareness and Research into a Devastating Form of Epilepsy

After losing her son to a rare form of epilepsy called NORSE, or New Onset Refractory Status Epilepticus, Nora Wong set out to get answers from doctors and researchers. When she found little information and more questions, she founded the NORSE Institute to raise awareness and fund research into this sudden and devastating form of epilepsy.

NORSE, or New Onset Refractory Status Epilepticus, is a form of epilepsy that strikes suddenly, resulting in status epilepticus, or unremitting seizures that are resistant to medications. Many of those impacted by NORSE are healthy, young people with no prior history of seizures. In some cases, there is a brief, minor illness such as flu or fever prior to the onset of NORSE, but little is understood about this condition. Nora Wong’s song Daniel was a healthy 22 year old college graduate just beginning his career when he was suddenly struck with seizures that would not stop. As doctors searched for a cause and struggled to halt the seizures, Daniel’s parents tried to comprehend what was happening to their son. After 79 days in the ICU, Daniel passed away without ever regaining consciousness. In the aftermath of this terrible tragedy, Nora Wong sought answers to what had happened. Working from a single article about NORSE, Nora found little information, but did find sympathetic clinicians and researchers who were willing to listen and investigate this mysterious condition. Ultimately, in collaboration with these doctors, Nora founded the NORSE Institute to bring awareness, build community, collect data, and fund research into NORSE. On this episode of Seizing Life®, Nora shares her son’s story, provides information about NORSE, and discusses the research being conducted to gather data, improve understanding, and inform treatment options for NORSE.

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