Registration is Open for the 2018 PAME Conference

The fourth biennial Partners Against Mortality in Epilepsy (PAME) Conference will take place Thursday, June 14, to Saturday, June 16, in Alexandria, Virginia.

This unique conference brings together health care providers, researchers, advocates, caregivers, families, and people living with epilepsy. These diverse stakeholders come together with a shared goal of improving our understanding of mortality in epilepsy, including sudden unexpected death in epilepsy (SUDEP).

Conference Objectives

• Critically evaluate the incidence, risk factors, and prevention strategies for mortality in epilepsy
• Describe the progress made and future directions for research regarding mortality in epilepsy
• Provide opportunities for collaborations among stakeholders, including people with epilepsy, researchers, families, clinicians, and advocates
• Gain skills in advocacy to build public awareness and impact public policy regarding epilepsy mortality

Helpful Links

• View the Conference Program
• Find Registration, Housing, Transportation, and Scholarship Information
• Attendee Information, including Childcare, Education Credits & Program Evaluation, Inspiration Wall, Patient & Family Room, Photography & Session Recordings, Refunds & Cancellation Policy

Early-bird registration pricing ends Wednesday, May 16.

Capitol Hill Visits

For those who are interested, there will be an opportunity to visit Capitol Hill on Thursday, June 14. These meetings are an opportunity for participants to meet with legislators and their staff about issues of importance to the PAME community.

The visits will be scheduled between 12:00 – 3:00 p.m. on Thursday so please plan your travel accordingly. A Hill visit prep meeting will be held at approximately 10:30 a.m. on Thursday at the hotel. We recognize that some participants will arrive in Alexandria after 10:30 a.m. and won’t be able to attend the full meeting. A conference call will be held in advance to help participants prepare for the meetings.

Everyone participating in the visits will receive talking points with key messages to sharing during the visits, Hill visit meeting tips, and information about scheduling meetings with your legislators.

Anyone who would like to participate can indicate interest on the registration form. If you have already registered but are interested in participating or would like more information, please contact Joanna Crooks.

Organizers

The major contributing organizations for PAME are the American Epilepsy Society and Epilepsy Foundation. Also providing significant support are Citizens United for Research in Epilepsy (CURE) and the Danny Did Foundation.

Why should I attend?

• After the 2016 PAME Conference, SUDEP Institute Bereavement Support Facilitator Linda Coughlin Brooks wrote about the conference in the article, “The Power of Advocating and Participating in Events Like PAME.”
• Gardiner Lapham RN, MPH, a scheduled speaker at the 2018 PAME Conference, wrote about turning her grief into action when she called on the epilepsy community to, “Dare to Attend PAME 2016.”