{"id":5932,"date":"2024-07-15T02:00:55","date_gmt":"2024-07-15T09:00:55","guid":{"rendered":"https:\/\/deepconnections.net\/?page_id=5932"},"modified":"2024-07-17T10:29:16","modified_gmt":"2024-07-17T17:29:16","slug":"therapies2","status":"publish","type":"page","link":"https:\/\/deepconnections.net\/azb\/care-and-family\/therapies2\/","title":{"rendered":"Therapies2"},"content":{"rendered":"<h1>\n\t\tTerapiyalar\n\t<\/h1>\n<h3>\n\t\tInformation on therapies for those with DEEs\n\t<\/h3>\n\t\t\t\t\t\t\t\t<a href=\"http:\/\/accordion-therapies-webinars\" target=\"_self\" rel=\"noopener\">\n\t\t\t\t\t\t<\/a>\n\t<h3><a href=\"http:\/\/accordion-therapies-webinars\" target=\"_self\" rel=\"noopener\">WEBINARS AND VIDEOS<\/a><\/h3><p>Don&#8217;t miss these informative webinars and videos that address important issues.<\/p>\n\t<h3>T\u0259qdimatlar<\/h3><p>Deus forma auroram sine volucres mixta frigore. Formas persidaque praebebat pendebat. Caesa consistere vis fratrum suis locis.<\/p>\n\t<h3>Tools &#038; Resources<\/h3><p>Deus forma auroram sine volucres mixta frigore. Formas persidaque praebebat pendebat. Caesa consistere vis fratrum suis locis.<\/p>\n\t<h3>Adaptive Equipment<\/h3><p>Deus forma auroram sine volucres mixta frigore. Formas persidaque praebebat pendebat. Caesa consistere vis fratrum suis locis.<\/p>\n\t\t\t\tTraveling with Your Medically Complex Child\n\t\t\t\t<p>This webinar is packed with great information, strategies, and tactics for traveling with a medically complex child.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"DEE-P:  Traveling with your medically complex child\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/NBOiMjQ9NR0?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/figure>\n\t\t\t\tDEE-l\u0259rd\u0259 Klinik s\u0131naqlara v\u0259 yeni m\u00fcalic\u0259l\u0259r\u0259 \u00e7\u0131x\u0131\u015f\u0131n art\u0131r\u0131lmas\u0131\n\t\t\t\t<p>Bu, 29 aprel 2024-c\u00fc ild\u0259 ke\u00e7iril\u0259n vebinar\u0131n qeydidir.<\/p>\n<p>This is a conversation about a promising clinical trial model for new epilepsy treatments that accelerates access to the wider community of DEEs. A &#8220;basket trial&#8221; 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 clinical trial design singling out individual disorders, and would mean increased access to clinical research for a wider range of families interested in participating. With this more inclusive model, treatments approved using this method could include DEEs in the &#8220;label&#8221; (i.e. approved by the FDA for use), reducing the need for families to have to fight with doctors and insurance companies for the use of drugs off-label. <\/p>\n<p>Epilepsiya m\u00fcalic\u0259si \u00fc\u00e7\u00fcn klinik s\u0131naqlarda bu yeni model haqq\u0131nda bu m\u00fczakir\u0259d\u0259 biz\u0259 qo\u015fulan Ba\u015f Tibb M\u00fct\u0259x\u0259ssisi Randall Kaye oldu. <a href=\"https:\/\/www.longboardpharma.com\/\">Longboard Pharmaceuticals<\/a> b\u00fct\u00fcn DEE-l\u0259ri \u0259hat\u0259 ed\u0259n yenilik\u00e7i Faza I\/II PACIFIC s\u0131naq dizayn\u0131nda bu modeli t\u0259tbiq ed\u0259nl\u0259r.<\/p>\n<p>Bu vebinar da t\u0259\u015fkilat\u0131n t\u0259r\u0259fda\u015fl\u0131\u011f\u0131 il\u0259 ke\u00e7irilib <a href=\"https:\/\/www.rareepilepsynetwork.org\/\">Nadir Epilepsiya \u015e\u0259b\u0259k\u0259si<\/a>, REN-in haz\u0131rk\u0131 s\u0259dri Christina SanInocencio t\u0259r\u0259find\u0259n t\u0259msil olunur.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"DEE-P: DEE-l\u0259rd\u0259 Klinik s\u0131naqlara v\u0259 yeni m\u00fcalic\u0259l\u0259r\u0259 \u00e7\u0131x\u0131\u015f\u0131n art\u0131r\u0131lmas\u0131\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/lMy9dvO1N8Q?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/figure>\n<p>DEE-P Connections, bu s\u0259b\u0259t s\u0131naq modelind\u0259n istifad\u0259 etm\u0259kd\u0259 \u0259cza\u00e7\u0131l\u0131q \u015firk\u0259tl\u0259rin\u0259 daha \u00e7ox d\u0259st\u0259k olmaq \u00fc\u00e7\u00fcn FDA il\u0259 f\u0259al \u015f\u0259kild\u0259 m\u00fcdafi\u0259 edir v\u0259 biz onlarla nadir epilepsiya \u00fc\u00e7\u00fcn t\u0259kmill\u0259\u015fdirilmi\u015f m\u00fcalic\u0259l\u0259ri s\u00fcr\u0259tl\u0259ndirm\u0259k z\u0259rur\u0259ti haqq\u0131nda dan\u0131\u015fma\u011fa k\u00f6m\u0259k etm\u0259k \u00fc\u00e7\u00fcn daha \u00e7ox ail\u0259ni salamlay\u0131r\u0131q. \u0130\u015ftirak etm\u0259k ist\u0259yirsinizs\u0259, \u0259laq\u0259 saxlay\u0131n \u2013 info@deepconnections.site<\/p>\n\t\t\t\tKompleks U\u015fa\u011f\u0131n\u0131zla S\u0259yah\u0259tinizi \u0130dar\u0259 Etm\u0259k\n\t\t\t\t<p>In this conversation, you will meet Blyth Lord &#8211; mom to Cameron who had a genetic disorder and passed away at the age of 2. She is the Founder of <a href=\"https:\/\/courageousparentsnetwork.org\/\">Courageous Parents Network<\/a> as well as an incredible new resource &#8211; <a href=\"https:\/\/neurojourney.courageousparentsnetwork.org\/\">NeuroJourney<\/a>, which guides families of children with severe neurological impairments (SNI) through the many stages we must confront when caring for our children. NeuroJourney is a comprehensive tool built with both caregivers and professionals, to help families navigate the evolving needs of our child as well as the complex decisions that we may have to face.<\/p>\n<p>This is a conversation between Blyth, DEE-P Connections Co-Founder and DEE mom, Gabi Conecker and Chrissy Salley &#8211; a Pediatric Psychologist working with the Courageous Parents Network and NeuroJourney.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"DEE-P: Introduction to NeuroJourney\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/jhP_s2slCOE?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/figure>\n<p>To learn more about medical, care and support or research topics for DEE families, visit our <a href=\"https:\/\/deepconnections.net\/azb\/resource-center-main\/\">Resurs M\u0259rk\u0259zi<\/a>.<\/p>\n\t\t\t\tBeyin Donorlu\u011fu: N\u0259l\u0259r\u0259 diqq\u0259t etm\u0259li, nec\u0259 i\u015fl\u0259yir v\u0259 nec\u0259 k\u00f6m\u0259k ed\u0259 bil\u0259r\n\t\t\t\t<p>In this important discussion with rare epilepsy moms who made the decision to donate their children&#8217;s brain tissue upon passing, we discuss a number of critical elements about this deeply personal and difficult decision including: <\/p>\n<p>1. How and why they made the decision to donate <br \/>2. How to manage family members who don&#8217;t understand or agree <br \/>3. The logistics of donation <br \/>4. How donation impacts the funeral\/celebration of life <br \/>And more<\/p>\n<p>Our guests are Shelley Oldham, Angie Weaver and Penny Howard.<\/p>\n<p>This webinar is hosted in partnership with <a href=\"https:\/\/www.scn2a.org\/\">FamilieSCN2A Fondu<\/a> and <a href=\"https:\/\/hope4harper.com\/\">Hope4Harper<\/a>.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"Beyin Donorlu\u011fu: N\u0259l\u0259r\u0259 diqq\u0259t etm\u0259li, nec\u0259 i\u015fl\u0259yir v\u0259 nec\u0259 k\u00f6m\u0259k ed\u0259 bil\u0259r\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/rMqlgtS8yXE?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/figure>\n<p>You can also learn more about how brain donation plays a crucial role in advancing scientific research\/breakthroughs and understanding neurological conditions in this <a href=\"https:\/\/deepconnections.net\/azb\/2022\/06\/27\/why-brain-tissue-donation-matters\/\">previous webinar<\/a> with families and professionals.<\/p>\n<p>Find more additional resources in our <a href=\"https:\/\/deepconnections.net\/azb\/resource-center-main\/\">Resurs M\u0259rk\u0259zi<\/a><\/p>\n<p>Daha \u00e7ox DEE resurslar\u0131 \u00fc\u00e7\u00fcn biziml\u0259 tan\u0131\u015f olun&nbsp;<a href=\"https:\/\/deepconnections.net\/azb\/resource-center-main\/\">resurs m\u0259rk\u0259zi<\/a><\/p>\n<figure><img loading=\"lazy\" decoding=\"async\" width=\"944\" height=\"256\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Screen-Shot-2024-03-08-at-7.55.04-AM.png\" alt=\"\" srcset=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Screen-Shot-2024-03-08-at-7.55.04-AM.png 944w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Screen-Shot-2024-03-08-at-7.55.04-AM-300x81.png 300w\" sizes=\"auto, (max-width: 944px) 100vw, 944px\" \/><\/figure>\n\t\t\t\tCortical Visual Impairment (CVI) and the Developmental and Epileptic Encephalopathies (DEEs)\n\t\t\t\t<p>In this webinar, you will learn more about what Cortical Visual Impairment (CVI) is, what things looks like to someone with CVI and how to manage care and adapt for your loved one with CVI. from both caregivers and a teacher of the visually impaired in the rare epilepsies. <\/p>\n<p>You&#8217;ll hear what CVI is, what it means for your child, how to get the right kind of therapy and adapt your home\/life. <\/p>\n<p>Our guests are rare epilepsy\/DEE mom Stephanie Kung and Becky Hommer, Teacher for the Visually Impaired at Connections Beyond Sight and Sound in Maryland.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"DEE-P: Cortical Visual Impairment in the Rare Epilepsies (DEEs)\" width=\"500\" height=\"375\" src=\"https:\/\/www.youtube.com\/embed\/h4QLGNrwrCM?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/figure>\n<p>To learn more about medical, care and support or research topics for DEE families, visit our <a href=\"https:\/\/deepconnections.net\/azb\/resource-center-main\/\">Resurs M\u0259rk\u0259zi<\/a>.<\/p>\n<h2>\n\t\tRecent Projects\n\t<\/h2>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/demos.wpbeaverbuilder.com\/wp-content\/uploads\/sites\/4\/bb-plugin\/cache\/2922127733_dc8576e308_b-landscape.jpg\" alt=\"2922127733_dc8576e308_b\" itemprop=\"image\" height=\"150\" width=\"150\" title=\"2922127733_dc8576e308_b\" onerror=\"this.style.display='none'\"  \/>\n<h4>Lorem Ipsum<\/h4>\t\n\t\t\t\t<a href=\"#\" target=\"_self\" itemprop=\"url\" rel=\"noopener\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/demos.wpbeaverbuilder.com\/wp-content\/uploads\/sites\/4\/bb-plugin\/cache\/2984808217_87edbdfa79_b-landscape.jpg\" alt=\"2984808217_87edbdfa79_b\" itemprop=\"image\" height=\"150\" width=\"150\" title=\"2984808217_87edbdfa79_b\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<\/a>\n<h4><a href=\"#\" target=\"_self\" rel=\"noopener\">Prima Tuba Aurea<\/a><\/h4>\t\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/demos.wpbeaverbuilder.com\/wp-content\/uploads\/sites\/4\/bb-plugin\/cache\/lights-1024x768-landscape.jpg\" alt=\"lights\" itemprop=\"image\" height=\"150\" width=\"150\" title=\"lights\" onerror=\"this.style.display='none'\"  \/>\n<h4>Ambitae Praebebat<\/h4>\t\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/demos.wpbeaverbuilder.com\/wp-content\/uploads\/sites\/4\/bb-plugin\/cache\/iStock_000012026571Medium-683x1024-landscape.jpg\" alt=\"Painted textured studio backdrop in shades of blue and green. Ideal for creating backdrops for dramatic studio portaits\" itemprop=\"image\" height=\"150\" width=\"150\" title=\"Blue and green textured studio backdrop\" onerror=\"this.style.display='none'\"  \/>\n<h4>Lorem Ipsum<\/h4>\t\n<h2>\n\t\tClient Love\n\t<\/h2>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/demos.wpbeaverbuilder.com\/wp-content\/uploads\/sites\/4\/2014\/02\/generic-white-dude-150x150.png\" alt=\"\" itemprop=\"image\" onerror=\"this.style.display='none'\"  \/>\n\t<h4>David Quest<\/h4>\n<p>Deus forma auroram sine volucres mixta frigore. Formas persidaque praebebat pendebat. Caesa consistere vis fratrum suis locis! Silvas campoque terras coeptis homo rudis fronde.<\/p>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/demos.wpbeaverbuilder.com\/wp-content\/uploads\/sites\/4\/2014\/02\/gal-150x150.png\" alt=\"\" itemprop=\"image\" onerror=\"this.style.display='none'\"  \/>\n\t<h4>Jennifer Barrett<\/h4>\n<p>Deus forma auroram sine volucres mixta frigore. Formas persidaque praebebat pendebat. Caesa consistere vis fratrum suis locis! Silvas campoque terras coeptis homo rudis fronde.<\/p>\n\t\t<h3>Questions about getting started? Drop us a line to find out more!<\/h3>\n\t\t<p>Effervescere quicquam tepescunt tegi agitabilis mentes mutatas.<\/p>\n\t\t\t<a href=\"\" target=\"_self\" rel=\"noopener\">\n\t\t\t\t\t\t\tGet In Touch\n\t\t\t\t\t<\/a>","protected":false},"excerpt":{"rendered":"<p>Therapies Information on therapies for those with DEEs WEBINARS AND VIDEOS Don&#8217;t miss these informative webinars and videos that address important issues. Presentations Deus forma auroram sine volucres mixta frigore.&hellip;<\/p>","protected":false},"author":8,"featured_media":0,"parent":2267,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_EventAllDay":false,"_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":false,"_EventShowMapLink":false,"_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":[],"_EventVenueID":[],"_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueState":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","_VenueShowMap":false,"_VenueShowMapLink":false,"footnotes":""},"class_list":["post-5932","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.1 (Yoast SEO v28.2) - 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