Recap of PAME 2018

The 2018 Partners Against Mortality in Epilepsy (PAME) Conference held June 14-16 in Alexandria, Virginia, created another amazing opportunity for researchers, scientists, medical professionals, and families from around the world to convene and discuss mortality in epilepsy. This unique conference brings together and engages people focusing on preventing death from epilepsy. Together, attendees share progress and set an agenda on what work is next.

Storming Capitol Hill

PAME Attendess Vist Senator Warner's Office Before the 2018 Conference

Before the official start of the conference, families and professionals participated in advocacy visits on Capitol Hill with their Senators and Representatives. During the Hill visits, individuals shared their journeys and passion behind eradicating sudden unexpected death in epilepsy (SUDEP) and other causes of early mortality in epilepsy.

Beyond sharing their personal connection, they requested continued support for funding for research, programs, data collection about those who have died due to the disease, and federal concerns in healthcare for those living with epilepsy. These meetings help raise awareness and hopefully, funding that could further the work being done in this space.

Conference Focuses on All Areas Related to Death in Epilepsy

Tom-Stanton

The conference itself had a robust, varied agenda led by co-chairs Tom Stanton, executive director, Danny Did Foundation; Dr. George Richerson, University of Iowa; and Dr. Elizabeth Donner, Hospital for Sick Children. Conference sessions included these topics:

• Where we are with the science
• Trends in frequency of SUDEP and other causes of early mortality
• How the advocacy community is working with lawmakers and other groups to advance this cause

Beyond SUDEP, this year there was also a focus on other mortalities in epilepsy. In addition to all the advocacy in SUDEP, it is also important to focus on all forms of preventable premature mortality in people living with epilepsy. Other causes of mortality, including injury, drowning, higher suicide rate and deaths related to status epilepticus (when a seizure lasts too long), were discussed.

2018 PAME Conference

Watch for More News

In future newsletters, we will share additional details on the various sessions, links to presentations, as well as available recordings.