Posts by Gabi Conecker
DEEs يۈرۈشلۈك قۇتقۇزۇش قۇتقۇزۇش دورىلىرى - 2-قىسىم
This webinar, which was originally broadcast live on July 8, 2020, gave a synopsis of recent in-depth interviews with DEE caregivers about their experiences utilizing rescue medications for DEEs and…
تېخىمۇ كۆپ ئوقۇڭCOVID-19 ۋاكسىنىسى ۋە تۇتقاقلىق كېسىلى - DEE نوپۇسىغا دىققەت قىلىڭ
In conjunction with NIH and our partners at the PCDH19 Alliance, we held this webinar to update DEE families on COVID-19 vaccines and epilepsy. This included updates on the development…
تېخىمۇ كۆپ ئوقۇڭDEEs يۈرۈشلۈك قۇتقۇزۇش قۇتقۇزۇش دورىلىرى - 1-قىسىم
This webinar was originally broadcast live on June 12, 2020. We heard from a caregiver about her experience navigating and using rescue medications for DEEs and from two leading professionals…
تېخىمۇ كۆپ ئوقۇڭئېغىر تۇتقاقلىق كېسىلى بارلار ۋە ئۇلارنىڭ قېرىنداشلىرى ئوتتۇرىسىدىكى ساغلام مۇناسىۋەتنى ئىلگىرى سۈرۈش
Have you struggled with how to manage the relationships between your medically complex children and their more typically developing siblings? Are you a sibling to someone with severe epilepsy and…
تېخىمۇ كۆپ ئوقۇڭئاز ئۇچرايدىغان بالىلار تۇتقاقلىق كېسىلىنىڭ داۋالاش سۈپىتىنى يۇقىرى كۆتۈرۈش
This quality of care webinar was moderated by Gabrielle Conecker, mother to Elliott who has SCN8A-related epilepsy and severe DEE, and is Co-Founder of Wishes for Elliott and DEE-P Connections.…
تېخىمۇ كۆپ ئوقۇڭDEE بالىڭىز بىلەن ئۆيدە ئۆگىنىش ۋە پۈتۈن ئائىلىگە قاتنىشىش ئىستراتېگىيىسى
This is a recording of the DEE-P Connections webinar from May 13, 2020 “Strategies for Fun and Learning at Home for Kids with DEEs and the Whole Family” which explored…
تېخىمۇ كۆپ ئوقۇڭCOVID-19 مۇھىتىدىكى بالىلار تۇتقاقلىق بىمارلىرىنىڭ يول باشلاش بىخەتەرلىكى
This webinar—planned in coordination with The Epilepsy Foundation of America—shared front-line experiences and updates on COVID-19 in severe pediatric epilepsy patients from three Boston Children’s Hospital Division of Epilepsy &…
تېخىمۇ كۆپ ئوقۇڭCOVID -19 قايغۇ لىنزىسى ئارقىلىق
DEE-P Connections planned this webinar in coordination with The Wendt Center for Loss and Healing. This is a recording of the webinar originally broadcasted on April 14, 2020. The webinar…
تېخىمۇ كۆپ ئوقۇڭDEEs نىڭ گېنى
This webinar was planned in coordination with Invitae and Children’s Hospital Colorado. The webinar was originally held on April 29, 2020. This webinar on the genetics of DEEs includes information…
تېخىمۇ كۆپ ئوقۇڭتېببىي مۇرەككەپ ۋە ياكى ئىممۇنىتېت كۈچى ئاجىز بالىلارنى تۇتقاقلىق كېسىلىگە گىرىپتار بولغان بالىلارنى COVID-19 دىن قوغداش
This session was moderated by Heidi Grabenstatter – Science Director for IFCR and the panelists for this webinar were: Dr. Anastassios Koumbourlis – Division Chief, Pulmonary & Sleep Medicine &…
تېخىمۇ كۆپ ئوقۇڭ