Acara
Napa EEG Penting lan Apa Sing Bisa Dicethakaké
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…
Nyegah 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,…
DEE-P Komunitas Chat
Gabung karo kita kanggo kesempatan kanggo nyambungake karo ibu STXBP1 lan Pekerja Sosial Amelia Seraphia Derr lan ibune, Susan Bourgerie, psikolog, sing mimpin sesi minggu kepungkur ing…
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 living with CVI: Anne Thompson Heller Stephanie Kung Madeleine Oudin Rachel Gaddis
DEE-P Komunitas Chat
Gabung karo kesempatan kanggo nyambungake karo wong tuwa / pengasuh liyane lan ngobrol babagan pengalaman kita nggedhekake bocah sing duwe DEE / epilepsi langka.
DEE-P Komunitas Chat
Gabung karo kesempatan kanggo nyambungake karo wong tuwa / pengasuh liyane lan ngobrol babagan pengalaman kita nggedhekake bocah sing duwe DEE / epilepsi langka.
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…
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 loved ones who are more profoundly impacted by disorders and are consistently left unmeasured. We will share an update on the massive data collected via…
Nambah Akses menyang Uji Coba Klinis lan Perawatan Anyar ing DEE
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 in clinical trials for medicines aiming to treat symptoms of those living with DEEs, including seizures. This broad approach is different than the current standard…
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 nationally and internationally. Hear all about packing, planning, meds, supplies, special equipment and more. Ask your questions of these seasoned mom travelers and learn their…
Sleep & DEEs
Join us as we discuss sleep issues within the DEE and rare epilepsies community.
