Seizure Technology – Tracking

This is the first webinar in the series “Technologies to Help Manage Seizures” This webinar provides an overview of seizure tracking for families, with a focus on those caring for children with severe epilepsies (also known as developmental and epileptic encephalopathies – DEEs). DEE-P co-hosted this series with Rob Moss, father to a son with…

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Seizure Technology – Monitoring

This is the second webinar in the series “Technologies to Help Manage Seizures” The Danny Did Foundation joins us to discuss the risks associated with epilepsy, including SUDEP, and the use of seizure detection devices as a tool to keep your loved one safer. DEE-P co-hosted this series with Rob Moss, father to a son…

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ESES, CSWS, EECSWS?

This webinar was broadcast live on June 10, 2021. Rare within rare – ESES Electrical status epilepticus during slow-wave sleep (ESES), also known as continuous spike-wave of slow sleep (CSWS) or epileptic encephalopathy with continuous spike-and-wave during sleep (or EECSWS) is a rare epilepsy syndrome which is usually seen in children who already have epilepsy…

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Seizure Action Plan Awareness

Anyone with seizures should have one… The week of February 8-14, 2021 is the first Seizure Action Plan Awareness Week (SAPAW) to be held annually (starting on the second Monday in February) to mark International Epilepsy Awareness Day. This initiative was launched by our partners at Tuberous Sclerosis Alliance, Dravet Syndrome Foundation and the LGS…

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SUDEP Part 3

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…

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SUDEP Part 2: What can we do?

Developmental And Epileptic Encephalopathies

There are a number of efforts underway to improve communication about and prevention of SUDEP. This webinar explores how some advocates are working to improve communication with families about SUDEP and prevent future cases of SUDEP. Our caregiver speaker is Jill Paradise. She was never told about and then lost her daughter—Quinn—to SUDEP and has…

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Stimulators- Could a VNS, DBS, or RNS Help?

Have you wondered whether a vagus nerve stimulator (VNS) might help reduce the intensity of your child’s seizures? What about a responsive neurostimulator (RNS)? Deep brain stimulator (DBS)? This webinar shares extensive information and research on the effectiveness of these stimulators. Our Caregiver Voice was Wendy Sunahara whose child, Shae, has both an RNS and…

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SUDEP Part 1: What do we know?

What do we know about SUDEP? What don’t we know? What is the state of the research? This webinar helps answer those questions, and more, with three experts: Sally Schaeffer – mother to Lydia, who passed away from SUDEP and Senior Director of the SUDEP Institute at the Epilepsy Foundation Samden Lhatoo, MD, FRCP (Lon)…

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Rescue Medications for DEEs Series – Part 4

This webinar was originally broadcast live on August 12, 2020 and featured a review of the first 3 webinars in the series and a panel of caregivers walking families through filling out their individualized seizure emergency plan (I-SEP). This fourth and final webinar of the series features Tracy Dixon-Salazar—Director of Research and Strategy at the…

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Autonomic Dysfunction/Dysautonomia

Does your child suffer from digestive and/or urinary motility problems? Do they suffer from temperature regulation issues? Do they have irregular blood pressure and/or heart rate? When you have ruled out seizures and cannot explain the endless list of unexplained and seemingly unrelated issues, you might consider exploring Autonomic Dysfunction/Dysautonomia. Our moderator for this session…

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