Bone Health for the DEEs

Join us to learn more about the brain - bone connection. We are still learning but both epilepsy and anti-seizure medications (ASMs) are associated with adverse effects on bone health. Those taking ASMs have increased rates of bone loss and other issues that may contribute to an increased risk of fracture. So what can we…

IEP Crash Course

School is just around the corner for many. It's a good time to revisit the world of IEPs Erin Prosser, Rare Disease Mom and Certified Master IEP Coach, will join us to provide a Crash Course on how to prepare, what to consider, and what to expect in the process. We hope you can join…

DEE-P Discussion – Life with an Undiagnosed DEE

Come join us as we discuss the experience of having a child with an undiagnosed rare disorder. We’ll discuss different ways of navigating the experience, the challenges, and the benefits of connection and community.

DEE-P Chat

Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies.

Why EEGs Matter and What They Can Reveal

Have you ever wondered about the benefits of EEG readings that our children receive? Join us for an illuminating session with Dr. Jay Pathmanathan, MD from Beacon Biosignals, pediatric epileptologist Ingo Helbig from Children's Hospital of Philadelphia and Leah Schust Myers and Shawn Egan from our partners at FamilieSCN2A Foundation for an EEG 101 and…

Preventing Caregiver Burnout: A Workshop on Building Resilience

Preventing Caregiver Burnout: A Workshop on Building Resilience is brought to you by an amazing mother daughter duo - STXBP1 mom and Social Worker, Amelia Seraphia Derr and her mom, Susan Bourgerie, a psychologist. Their workshop is based on the belief in our innate capacity to adapt, recover, and even thrive despite the effects of…

DEE-P Community Chat

Join us for an opportunity to connect with STXBP1 mom and Social Worker Amelia Seraphia Derr and her mom, Susan Bourgerie, a psychologist, who led our session last week on preventing caregiver burnout and building resilience. During this session, you can share your experiences, ask questions and connect with other parents/caregivers about our lives raising…

Cortical Visual Impairment and the DEEs

Join us to learn more about Cortical Visual Impairment (CVI) from both caregivers and a teacher of the visually impaired in the rare epilepsies. You'll hear what CVI is, what it means for your child, how to get the right kind of therapy and adapt your home/life. Our guests will be rare epilepsy/DEE mom Stephanie…

DEE-P Discussion: CVI and the DEEs

Join us for a conversation with caregivers about cortical visual impairment - diagnosis, therapies, adaptations and what life is like with CVI. Our guests will be DEE caregivers of children living with CVI: Anne Thompson Heller Stephanie Kung Madeleine Oudin Rachel Gaddis

DEE-P Community Chat

Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies.

DEE-P Community Chat

Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies.

A Gift for Future Generations – Brain Donation: What to Consider and How it Works

In this important discussion with rare epilepsy moms who made the decision to donate theirs children's brain tissue upon death, we will discuss a number of critical elements about this deeply personal and difficult decision including: 1. How and why they made the decision to donate2. How to manage family members who don't understand or…