Get Involved

Personal stories, as painful as they are to tell and to hear, sharpen our focus and strengthen our resolve. If you’ve experienced a loss related to epilepsy, consider sharing your story to promote understanding and to further meaning in our shared work. Sign up and we will be in touch.

Help raise awareness about epilepsy mortality and advocate for policy reform to end these devastating and sometimes preventable deaths. All voices are critical!

The accompanying Advocacy Toolkit has been designed to help advocates inform state lawmakers about positive changes they can make to help save lives.

Losing a loved one to an epilepsy-related cause can be heartbreaking. Bereaved families are not alone. Below is a list of family-led foundations that have established a charity in response to the loss of a loved one. We also included public organizations that provide SUDEP education as resources for all members of the epilepsy community. PAME hopes you can use this resource as a starting place to find connections with other families that turned their grief into action.

Join the PAME community! Sign up to receive updates and information on events.

We invite organizations and individuals to become a sponsor of the PAME collaborative. PAME seeks funds to support the annual conference, educational outreach, advocacy efforts, and other special projects that advance epilepsy mortality prevention. Please contact Alison Kukla for more information.