This is the recording of the “SUDEP – Family Perspectives” webinar which was recorded on January 27th, 2021.
To wrap up this series, we heard from families directly.
The session was moderated by Sally Schaeffer – mother to Lydia—who had a rare form of epilepsy and passed away from SUDEP—and Senior Director of the SUDEP Institute at the Weqfa Epilepsy.
Our caregiver panelists, all powerhouse advocates, were:
Danielle O’Ryan, who lost her brother, Josh, to SUDEP.
Edana Perry, who lost her daughter, Kayla, to SUDEP.
Teresa Elder, whose adult son, Tommy, lives with an aggressive form of rare epilepsy.
Ji bo bêtir çavkaniyên DEE, me binihêrin navenda çavkaniyê
Daxuyaniya nepenîtiyê
Em dizanin ku nepeniya we girîng e. Daxuyaniya nepenîtiyê ya me celebên agahdariya kesane ku em distînin û berhev dikin dema ku hûn vê malperê bikar tînin, û her weha hin gavên ku em ji bo parastina agahdariyan digirin destnîşan dike. Ji kerema xwe li vir bêtir bixwînin.