This webinar was originally broadcast live on July 22, 2020 and featured a panel of caregivers sharing their experiences utilizing rescue medications for DEEs.
This third webinar of the Rescue Medications for DEEs series features a discussion with a fantastic panel of 5 caregivers of young people with DEEs about their experiences using rescue meds and their discussions with and advocating to doctors for comprehensive seizure rescue plans.
The panelists were:
Elizabeth Terry is mom to 15-year-old Spencer, who was diagnosed with LGS at age 7. Spencer’s seizures have increased as she’s grown, and so has their use of rescue meds. Spencer loves Sesame Street and dogs, and they live in St. Louis, Missouri.
Emily Bell is mom to 5 year old Madeleine, co-chair and founder of the Bow Foundation dedicated to supporting GNAO1 families, research and awareness.
Kayleigh Keen is mom to her 13 yo, Dylan, who has an LGS diagnosis.
Shanna Tolbert is mom to 5-year-old Ireland, who has a CACNA1A-related DEE. Ireland experiences frequent status seizures, so rescue meds are a critical pare of her care. Ireland loves Paw Patrol, attending parties with friends, and anything that goes fast. They live in Atlanta, GA with dad and little sister.
Stacy Bartik is mom to Amanda, 15, who has an SCN2A diagnosis.
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