Posts by G C
Managing 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…
Read MoreRare Caregiving & Challenges with Self-Care – A DEE-P Discussion
This webinar was recorded on June 30th, 2023. Join us for this discussion with rare caregivers about the challenges of self-care. People are fond of telling us we need to…
Read MorePrograms to Help Care for Our Complex Kids – Inpatient and Outpatient
This webinar was recorded on June 7th, 2023. Complex Care programs are primary care for children with complex chronic medical conditions, often with multiple diagnoses and dependent on technology (i.e.…
Read MoreProtecting Rare Access to Off-Label Treatments
This webinar was recorded on May 22nd, 2023. Have insurance companies or Medicaid refused to cover critical prescribed treatments claiming they were off-label and not “medically necessary”? Is coverage denied…
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