Published on: Tue, Jun 19 2012
Evanston, IL, June 13, 2012 –The first-ever Partners Against Mortality in Epilepsy (PAME) Conference will be held June 21-24, 2012 at the Hilton Orrington in the Chicago suburb of Evanston, IL. The three-day learning event is devoted predominantly to Sudden Unexpected Death In Epilepsy (SUDEP), a phenomenon thought to claim up to 5,000 lives each year in the US. This meeting boldly unites scientists, clinicians, people living with epilepsy, bereaved family members and epilepsy advocates from around the world to foster knowledge, heighten awareness and hasten action around epilepsy mortality broadly and Sudden Unexpected Death in Epilepsy (SUDEP) specifically.
The PAME meeting is an outflow of significant momentum in the field, a realization of the urgency of the problem and the desire between all parties to work together to advance scientific and clinical research, public and patient awareness and prevention strategies. The meeting will include reports on recent basic scientific discoveries, identification of opportunities for further research and ways to promote public awareness. The meeting will also equip providers with skills to discuss mortality risks and prevention strategies with their patients—a topic that is routinely avoided during the provider/patient exchange. Bereaved families and persons with epilepsy will also be present to share their experiences, gain knowledge and identify ways they can help advance research and public awareness
This unique conference is being co-chaired by Jeff Buchhalter, M.D., Ph.D., FAAN and Gardiner Lapham, RN, MPH who say that “the spirit driving the conference is one of hope and partnership. We are emboldened by the diversity and strength of our network and believe that by working together we will be more effective researchers, clinicians and advocates. This conference is unique in that all of the various stakeholders will attend the same session. We expect the presentations to be informative and provocative and our hope is that the proceeding discussion period will be just as fruitful.”
Gardiner Lapham, a mother who lost her 4 year old son to SUDEP says that for her “this meeting represents hope that one day families will not have to suffer the pain and despair of losing a loved one to epilepsy. It will also arm families with knowledge to help reduce SUDEP risk.”
The conference has been planned and supported by the following organizations: American Epilepsy Society (AES), Citizen United for Research in Epilepsy (CURE), Center for Disease Control and Prevention (CDC), Danny Did Foundation, Epilepsy Foundation of America (EFA), Epilepsy Therapy Project (ETP), Intractable Childhood Epilepsy (ICE), Finding a Cure for Epilepsy & Seizures (FACES), LGS Foundation, National Institute of Neurological Disorders and Stroke (NINDS), RTI International and SUDEP Aware.
More detailed information about this conference is available on all participating partner websites.