活動
DEE-P 社群聊天
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 社群聊天
加入我們，有機會與其他家長/照顧者聯繫，並討論我們撫養患有 DEE/罕見癲癇症的兒童的經驗。
DEE-P 社群聊天
加入我們，有機會與其他家長/照顧者聯繫，並討論我們撫養患有 DEE/罕見癲癇症的兒童的經驗。
給子孫後代的禮物－大腦捐贈：考慮因素及其運作方式
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…
Inchstone 計畫社群更新 – 2024 年春季
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…
增加 DEE 中臨床試驗和新療法的可及性
加入我們，討論一種有前途的新癲癇治療臨床試驗模型，該模型可加速更廣泛的 DEE 社群的普及。 「籃子試驗」設計用於旨在治療 DEE 患者症狀（包括癲癇發作）的藥物臨床試驗。這種廣泛的方法與當前標準不同...
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.
How to Get Grants and Funding for Medical Expenses
DEE-P Connections, in association with DYNC1H1 Association, is excited to welcome Advocacy Abby, who will assist families with medically complex children in navigating the complexities of grants and other funding…
ALL ABOUT The Connected Parent
Join us and the founder of The Connected Parent, Julie Walters. The Connected Parent is like Yelp, but for families that have kids with disabilities!
