SUDEP Awareness Series | Part 3 – SUDEP Research In Part 3 in our SUDEP blog series – SUDEP Research, we’ll provide details on the current research being done to find answers regarding the possible causes for SUDEP. Unfortunately, the causes of SUDEP are poorly understood, but many areas are currently being studied. Research into…
SUDEP Awareness Series | Part 2 – Talking about SUDEP with your doctors In Part 2 in our SUDEP blog series – Talking about SUDEP with your doctors, we’ll provide information and guidance on how to begin the SUDEP conversation with your doctors. What Is SUDEP? SUDEP is the sudden, unexpected death of someone…
SUDEP Awareness Series | Part 1 – What is SUDEP? Hope for HH has been made aware of two young adults with HH that recently passed away. Both cases are suspected of being related to SUDEP (Sudden Unexpected Death in Epilepsy). For most HH families – SUDEP is an unfamiliar term that really should…
One of our favorite organizations, CURE (Citizens United for Research in Epilepsy) is assisting Johns Hopkins in promoting its EpiWatch research study which will collect data about seizures and seizure treatment. The intent of EpiWatch is to provide those with epilepsy a means to track seizure activity, medications, and possible triggers or side effects as…
AAN & AES endorse a New Clinical Guideline on SUDEP The American Academy of Neurology and the American Epilepsy Society recently published a practice guideline providing recommendations for neurologists to inform all individuals with epilepsy about the risk of sudden unexpected death due to epilepsy (SUDEP), the most common cause of mortality for people with epilepsy. Every patient…
The Epilepsy Leadership Council (ELC) (formerly Vision 20-20) is a coalition of professional, governmental, and non-profit organizations representing patients with epilepsy and their families. The mission is to serve as a mechanism through which organizations can work on shared goals and projects that will have a positive impact on the lives of individuals with epilepsy,…
Inspired and Hopeful. At the conclusion of the five days, the Hope for HH Board of Directors felt a new sense of energy, inspiration and most of all HOPE for what the future holds for research, treatment and eventual cure of epilepsy within our hypothalamic hamartoma community and those of other rare epilepsy disorders. The…
Grace Katherine Webster (2003 – 2011) Perry and I had married in early 2002 with the hopes of beginning our family immediately. Unfortunately, we experienced two back to back miscarriages in 2002 and we felt the dreams of a family were slipping away from us. We decided to seek the help of a fertility specialist…
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