{"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\/gl_es\/care-and-family\/therapies2\/","title":{"rendered":"Therapies2"},"content":{"rendered":"<h1>\n\t\tTerapias\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>Presentaci\u00f3ns<\/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\tAumento do acceso aos ensaios cl\u00ednicos e aos novos tratamentos nos DEE\n\t\t\t\t<p>Esta \u00e9 unha gravaci\u00f3n do seminario web realizado o 29 de abril de 2024.<\/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>A esta discusi\u00f3n sobre este novo modelo de ensaios cl\u00ednicos para tratamentos de epilepsia acompa\u00f1ouse Randall Kaye, director m\u00e9dico de <a href=\"https:\/\/www.longboardpharma.com\/\">Longboard Pharmaceuticals<\/a> quen aplicou este modelo no seu innovador dese\u00f1o de ensaio PACIFIC de Fase I\/II, que inclu\u00edu todos os DEE.<\/p>\n<p>Este seminario web tam\u00e9n se realizou en colaboraci\u00f3n co <a href=\"https:\/\/www.rareepilepsynetwork.org\/\">Rede de epilepsia rara<\/a>, representada por Christina SanInocencio, actual presidenta de REN.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"DEE-P: Aumento do acceso a ensaios cl\u00ednicos e novos tratamentos nos DEE\" 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 defende activamente \u00e1 FDA para apoiar m\u00e1is \u00e1s compa\u00f1\u00edas farmac\u00e9uticas na utilizaci\u00f3n deste modelo de proba de cesta e damos a benvida a m\u00e1is familias para que axuden a falar sobre a necesidade de acelerar os tratamentos mellorados para as decenas de epilepsias raras. Ponte en contacto se queres participar: info@deepconnections.site<\/p>\n\t\t\t\tXestionar a viaxe co seu fillo complexo\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\/gl_es\/resource-center-main\/\">Centro de recursos<\/a>.<\/p>\n\t\t\t\tDoaz\u00f3n de cerebro: o que hai que considerar, como funciona e como pode axudar\n\t\t\t\t<p>Nesta importante discusi\u00f3n con nais raras con epilepsia que tomaron a decisi\u00f3n de doar o tecido cerebral dos seus fillos ao morrer, comentamos unha serie de elementos cr\u00edticos sobre esta decisi\u00f3n profundamente persoal e dif\u00edcil, inclu\u00edndo: <\/p>\n<p>1. Como e por que tomaron a decisi\u00f3n de doar <br \/>2. Como xestionar os membros da familia que non entenden ou est\u00e1n de acordo <br \/>3. A lox\u00edstica da doaz\u00f3n <br \/>4. Como afecta a doaz\u00f3n no funeral\/celebraci\u00f3n da vida <br \/>E m\u00e1is<\/p>\n<p>Os nosos convidados son Shelley Oldham, Angie Weaver e Penny Howard.<\/p>\n<p>Este seminario web est\u00e1 organizado en colaboraci\u00f3n con <a href=\"https:\/\/www.scn2a.org\/\">Fundaci\u00f3n FamilieSCN2A<\/a> e <a href=\"https:\/\/hope4harper.com\/\">Hope4 Harper<\/a>.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"Doaz\u00f3n de cerebro: o que hai que considerar, como funciona e como pode axudar\" 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>Tam\u00e9n podes aprender m\u00e1is sobre como a doaz\u00f3n de cerebro desempe\u00f1a un papel crucial para avanzar na investigaci\u00f3n cient\u00edfica\/avanzamentos e comprender as condici\u00f3ns neurol\u00f3xicas neste <a href=\"https:\/\/deepconnections.net\/gl_es\/2022\/06\/27\/why-brain-tissue-donation-matters\/\">webinar anterior<\/a> con familias e profesionais.<\/p>\n<p>Atopa m\u00e1is recursos adicionais na nosa web <a href=\"https:\/\/deepconnections.net\/gl_es\/resource-center-main\/\">Centro de recursos<\/a><\/p>\n<p>Para obter m\u00e1is recursos DEE, consulta o noso&nbsp;<a href=\"https:\/\/deepconnections.net\/gl_es\/resource-center-main\/\">centro de recursos<\/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\tDeficiencia visual cortical (CVI) e encefalopat\u00edas do desenvolvemento e epil\u00e9pticas (DEE)\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\/gl_es\/resource-center-main\/\">Centro de recursos<\/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 v28.3) - 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