活動
防止護理人員倦怠：增強復原力研討會
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 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
在與決定在孩子去世後捐獻孩子腦組織的罕見癲癇媽媽進行的重要討論中，我們將討論有關這一非常個人化且困難的決定的一些關鍵要素，包括： 1. 他們如何以及為何做出捐獻決定2。如何管理不理解或不理解的家庭成員...
Inchstone 計畫社群更新 – 2024 年春季
請加入 Inchstone 專案研究團隊，了解我們努力創建一系列評估工具的最新進展，這些工具可以準確衡量我們所愛的人的進展，這些人受到疾病的影響更嚴重，並且一直未被衡量。我們將分享透過以下方式收集的海量資料的最新資訊：
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 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.
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 sources.
