Oct 31, 2018
As we turn our focus to SUDEP ACTION DAY, I am excited to welcome , Sally Schaeffer, Mom, Advocate and Director of the SUDEP Institute with the National Epilepsy Foundation.
As the Director of the SUDEP (Sudden Unexpected Death in Epilepsy), Sally helps drive the mission of eradicating SUDEP, bringing awareness, and most importantly supporting those that have lost someone to it.
Sally, mother of 3 children, lost her daughter Lydia on Mother’s Day in 2014. Lydia was born with a rare genetic chromosome abnormality called Kleefstra Syndrome. She was 1 of 50 worldwide when diagnosed 11 years ago. There are now over 500. She was also diagnosed with a rare epilepsy that occurred during sleep that they believe took her life.