The NORSE Institute: A Mother’s Loss Drives Awareness and Research into a Devastating Form of Epilepsy
Description
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.
Joey’s Song founder Mike Gomoll shares his son’s epilepsy story and discusses the creation, growth, and evolution of Joey’s Song into the multi-artist, multi-day, “Freezing Man Festival.”
Published 11/06/24
In observance of Sudden Unexpected Death in Epilepsy (SUDEP) Action Day on October 16th, we speak with the Maffie family about the tragic loss of Anthony Maffie to SUDEP and their advocacy and fundraising efforts in Anthony’s honor.
Published 10/02/24