SUDEP Institute / Epilepsy Foundation

11/02/2021

Continue to take action with our nationwide Epilepsy Foundation family.

02/20/2021

Mortality in epilepsy is impacted by factors that often are not present in other disease states, including the suddenness of death, and the common scenario where the risk of death was never discussed. This free webinar from Partners Against Mortality in Epilepsy (PAME) will explore grief among those who have lost a loved one to epilepsy, with a focus on the arc of grief over time, the impact of whether disclosure took place prior to death and what "interventions" were most helpful in the time following death of a loved one.

Speakers and panelists include:

Jeffrey Buchhalter MD, PhD, PAME Executive Committee
Tom Stanton, Executive Director of Danny Did
Sarah Friebert, MD, Director, Pediatric Palliative Care; Akron Children’s Hospital
Rajesh Ramachandran Nair, MD, FRCPC, Medical Director, Comprehensive Pediatric Epilepsy Program, McMaster Children’s Hospital & McMaster University
Sally Schaffer, parent
Edana Perry, parent
Michael Schafer, parent and Co-founder of HOPE4SUDEP (website and fund-raising foundation in honor of Cameron Benninghoven); Lay Member Research Grant Committee for CURE

The webinar will include an overview of grief, a report on a recent survey, and a panel discussion of parents who lost a child to an epilepsy-related cause. Families, advocates, and professionals are welcome to participate. Please email [email protected] with questions.

Grief and Death in Epilepsy: Learning From Loss
Tuesday, March 2, 2021 at 2 pm Central Time

REGISTER HERE:

Mortality in epilepsy is impacted by factors that often are not present in other disease states, including the suddenness of death, and the common scenario where the risk of death was never discussed. This webinar will explore grief among those who have lost a loved one to epilepsy, with a focus on....

01/26/2021

DEE-P Connections, a project by Wishes for Elliot is having their 3rd and final webinar about SUDEP Wednesday, 1/27 at 6 PM EST/5 PM CST/3 PM PST.

Sally Schaeffer, Sr. Director SUDEP Institute will be speaking with a group of family members to help provide more education, information and resources around Sudden Unexpected Death in Epilepsy (SUDEP).

Register today to listen for more information. You can find past SUDEP webinars through the DEE-P connections site.

Please join us for part 3 of this series on Sudden Unexpected Death in Epilepsy. To wrap up this series—which began with a session on what we know about SUDEP, the second on what we can do—we will hear from families directly. This will be a moving opportunity to learn, ask your questions and ens...

01/19/2021

Would you like to share epilepsy with the world? You can now purchase SELECT ITEMS on shop.epilepsy.com/.

There are limited quantities and sizes but you can get up to 50% off. Sale ends January 24th so hurry, tell your friends and family and snag some great items!

Epilepsy Foundation | End Epilepsy | Shop | Store | Logo |Branded Merchandise | Tees | T-Shirts | Walk | Fundraising

01/11/2021

The Epilepsy Foundation's Epilepsy Learning Portal is a resource for professionals, people with epilepsy, caregivers, and the public to learn more about , seizures, and . Create your account: learn.epilepsy.com

http://bit.ly/2KZyc0h

12/08/2020

Did you miss the Partners Against Mortality in Epilepsy (PAME) conference yesterday?

If so, please check out all the amazing information and work being done to stop death in epilepsy at the PAME website.

12/07/2020

Partners Against Mortality is a conference to discuss improving understanding of and working to prevent epilepsy-related mortality.

While this conference can't be in person we are pleased to share it will be live streamed via https://www.pameonline.org/2020 and AES Facebook Live to allow advocates and families to view the presentations. After the session, it will be linked on the PAME Website - https://www.pameonline.org/

Hope you can join us or view it later.

11/06/2020

A family in Alabama is raising awareness about unexpected losses in epilepsy. Our thoughts are always with those who lost someone they love and care about.

Like a typical 8-year-old, Jax Coleson loved basketball and superheroes. He loved to swim, had lots of friends and did all the normal kid things.

11/03/2020

Join Stream for Epilepsy on Friday, November 6 at 2:00 p.m. ET on our Twitch channel. We will be playing a game and talking with SUDEP Institute Director Sally Schaeffer about sudden unexpected death in epilepsy.

Subscribe to our Twitch channel>> https://www.twitch.tv/streamforepilepsy
Register through our website: https://bit.ly/33fZqF2
Sign up on Tiltify: https://bit.ly/3kabRcl
Sign up on Streamlabs charity: https://bit.ly/3i0yfTX

The official Twitch channel for the Epilepsy Foundation's Stream for Epilepsy initiative.

10/23/2020

SUDEP is a WORLDWIDE problem and the SUDEP Institute Director, Sally Schaeffer discusses this with Jane Hanna, CEO of SUDEP Action out of the UK and Angela Muriithi, an epilepsy awareness ambassador from Kenya. Watch now:

SUDEP Institute Director Sally Schaeffer discusses Sudden Unexpected Death in Epilepsy (SUDEP) with Jane Hanna, CEO of SUDEP Action UK, and Angela Muriithi, ...