Webinar
Understanding ASOs & Informed Consent
Navigating emerging treatment options can feel overwhelming, especially when families are asked to make decisions about experimental or individualized therapies. In this educational webinar, DEEP and KCNT1 Epilepsy explore the…
Read MoreALL ABOUT The Connected Parent
We are joined by the founder of The Connected Parent, Julie Walters. Julie shares how her life lead her to investing her whole life savings into The Connected Parent platform.…
Read MoreIncreasing Access to Clinical Trials and New Treatments Across the DEEs
This is a recording of the webinar held on April 29, 2024. This is a conversation about a promising clinical trial model for new epilepsy treatments that accelerates access to…
Read MoreManaging the Journey with your Complex Child
In this conversation, you will meet Blyth Lord – mom to Cameron who had a genetic disorder and passed away at the age of 2. She is the Founder of…
Read MoreBrain Donation: What to consider, how it works and how it can help
In this important discussion with rare epilepsy moms who made the decision to donate their children’s brain tissue upon passing, we discuss a number of critical elements about this deeply…
Read MorePreventing Caregiver Burnout: A Workshop on Building Resilience
This workshop on on Building Resilience and Preventing Caregiver Burnout was held with an amazing mother daughter duo – STXBP1 mom and Social Worker, Amelia Seraphia Derr and her mom,…
Read MoreWhy EEGs Matter and What They Can Reveal
This is the recording of the DEE-P webinar which was recorded on October 12, 2023. Have you ever wondered about is there was more we could learn from the EEG…
Read MoreUndiagnosed
This DEE-P Discussion was recorded on September 13, 2023. During this DEE-P Discussion, we explore the experience of having a child with an undiagnosed rare epilepsy disorder. We discuss different…
Read MoreIEP Crash Course
This webinar was recorded on August 15th, 2023. The IEP process can be overwhelming and intimidating. In this session, Erin Prosser, Rare Disease Mom and Certified Master IEP Coach, provides…
Read MoreBone Health for the DEEs
This is the recording of the DEE-P webinar which was recorded on August 5, 2023. We are still learning but both epilepsy and anti-seizure medications (ASMs) are associated with adverse…
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