Sally Schaeffer, SUDEP Institute Director's picture
My name is Sally and I live in the Midwest with my family. Professionally, I have a degree in Healthcare Administration and have worked in the healthcare field in marketing, sales, research and product development. Personally and more importantly, I have a supportive, loving husband and 3 children - however one of them - my sweet, special needs daughter, Lydia, died at the age of 7 on Mother's Day, May 11, 2014. I have two growing and thriving boys - one whom was older than Lydia and one younger. A little about what brought me here. Lydia had a very rare chromosome disorder and was diagnosed early on with epilepsy which morphed as she got older to a subclinical epilepsy - Electrical Status Epilepticus in Sleep (ESES). Unfortunately, we ran out of pharmaceutical interventions and other options were limited. I was an advocate in my state and federally for other therapeutic treatments for epilepsy but unfortunately, it was too late for our girl. For 7 years my life and purpose was around helping my daughter be the best she could be with her limitations and needs. Now that she is gone I have channeled my energy, business acumen and knowledge to help others by helping them understand SUDEP, special needs and most of all loss and bereavement. As the SUDEP Director with the Epilepsy Foundation, I will continue its mission to find ways to eradicate SUDEP and support those affected by it.

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