SUDEP Aware is a charity committed to finding the cause(s) and prevention(s) of Sudden Unexpected Death in Epilepsy (SUDEP) through:
- raising awareness (via its Making Sense of SUDEP campaign, PAME conference planning/sponsorship, and Professional Development program);
- improving understanding of SUDEP (by creating and making freely available, reliable, accurate information via its SUDEP information brochures and the one-stop SUDEP resource www.sudepglobalconversation.com);
- supporting research (via recruitment of study participants, providing research grants); and
- assisting families bereaved by, and living with, epilepsy across the USA and Canada.
It was co-founded in 2008 by Tamzin Jeffs, who lost her sister to SUDEP and lives with epilepsy, and paediatric neurologist/SUDEP researcher Dr Elizabeth Donner at the Hospital for Sick Children, Toronto.
What People Are Saying
""SUDEP needs to become public knowledge, just as much as SIDS. It needs to be as openly discussed, as readily appreciated and given equal recognition as an important issue requiring immediate attention. There are ways to reduce its risk, despite the lack of understanding of its cause.""
— Tamzin Jeffs, co-founder of SUDEP Aware & person living with epilepsy
"People with epilepsy have the right to know that SUDEP exists, and they have the right to be responsibly counselled about how to reduce the risk."
— Dr Elizabeth Donner, co-founder of SUDEP Aware.