ইভেন্ট
ইইজি কিয় গুৰুত্বপূৰ্ণ আৰু ই কি প্ৰকাশ কৰিব পাৰে
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…
যত্ন লোৱা ব্যক্তিৰ বাৰ্নআউট প্ৰতিৰোধ কৰা: স্থিতিস্থাপকতা গঢ়ি তোলাৰ ওপৰত এখন কৰ্মশালা
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 সম্প্ৰদায়ৰ আড্ডা
STXBP1 মা আৰু সমাজকৰ্মী Amelia Seraphia Derr আৰু তেওঁৰ মা, চুজান Bourgerie, এগৰাকী মনোবিজ্ঞানী, যি যোৱা সপ্তাহত আমাৰ অধিবেশনৰ নেতৃত্ব দিছিল...
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…
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…
DEE-P সম্প্ৰদায়ৰ আড্ডা
Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies.
DEE-P সম্প্ৰদায়ৰ আড্ডা
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…
The Inchstone Project Community Update – Spring 2024
Please join The Inchstone Project Research Team for an update on the progress of our efforts to create a range of assessment tools that can accurately measure progress in our…
ডি ই ইসমূহৰ মাজেৰে ক্লিনিকেল ট্ৰায়েল আৰু নতুন চিকিৎসাৰ সুবিধা বৃদ্ধি কৰা
Join us for a conversation about a promising model of clinical trials for new epilepsy treatments that accelerate access to the wider community of DEEs. The “basket trial” design is used…
Traveling with your medically complex child
In this extended discussion, we will hear from a group of DEE moms about how they manage and plan for adventures and travel with their medically complex children - both…
Sleep & DEEs
Join us as we discuss sleep issues within the DEE and rare epilepsies community.
