{"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\/pt\/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>Apresenta\u00e7\u00f5es<\/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\tAumentando o acesso a ensaios cl\u00ednicos e novos tratamentos nos DEEs\n\t\t\t\t<p>This is a recording of the webinar held on April 29, 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>Joining us for this discussion about this new model in clinical trials for epilepsy treatments was Randall Kaye, Chief Medical Officer at <a href=\"https:\/\/www.longboardpharma.com\/\">Longboard Pharmaceuticals<\/a> who has applied this model in their innovative Phase I\/II PACIFIC trial design, which was inclusive of all DEEs.<\/p>\n<p>This webinar was also held in partnership with the <a href=\"https:\/\/www.rareepilepsynetwork.org\/\">Rare Epilepsy Network<\/a>, represented by Christina SanInocencio, the current REN Chair.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"DEE-P: Increasing Access to Clinical Trials and New Treatments Across the DEEs\" 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 is actively advocating with the FDA to be more supportive of pharmaceutical companies in utilizing this basket trial model and we welcome more families to help speak out about the need to accelerate improved treatments for the dozens of rare epilepsies. Reach out if you want to get involved &#8211; info@deepconnections.site<\/p>\n\t\t\t\tGerenciando a jornada com seu filho 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\/resource-center-main\/\">Centro de recursos<\/a>.<\/p>\n\t\t\t\tDoa\u00e7\u00e3o de c\u00e9rebros: o que considerar, como funciona e como pode ajudar\n\t\t\t\t<p>Nesta importante discuss\u00e3o com m\u00e3es com epilepsia rara que tomaram a decis\u00e3o de doar o tecido cerebral dos seus filhos ap\u00f3s a morte, discutimos uma s\u00e9rie de elementos cr\u00edticos sobre esta decis\u00e3o profundamente pessoal e dif\u00edcil, incluindo: <\/p>\n<p>1. Como e por que tomaram a decis\u00e3o de doar <br \/>2. Como lidar com familiares que n\u00e3o entendem ou n\u00e3o concordam <br \/>3. A log\u00edstica da doa\u00e7\u00e3o <br \/>4. Como a doa\u00e7\u00e3o impacta o funeral\/celebra\u00e7\u00e3o da vida <br \/>E mais<\/p>\n<p>Nossos convidados s\u00e3o Shelley Oldham, Angie Weaver e Penny Howard.<\/p>\n<p>Este webinar \u00e9 hospedado em parceria com <a href=\"https:\/\/www.scn2a.org\/\">Funda\u00e7\u00e3o Fam\u00edliaSCN2A<\/a> e <a href=\"https:\/\/hope4harper.com\/\">Hope4Harper<\/a>.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"Doa\u00e7\u00e3o de c\u00e9rebros: o que considerar, como funciona e como pode ajudar\" 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>Voc\u00ea tamb\u00e9m pode aprender mais sobre como a doa\u00e7\u00e3o de c\u00e9rebros desempenha um papel crucial no avan\u00e7o da pesquisa\/avan\u00e7os cient\u00edficos e na compreens\u00e3o das condi\u00e7\u00f5es neurol\u00f3gicas neste <a href=\"https:\/\/deepconnections.net\/2022\/06\/27\/why-brain-tissue-donation-matters\/\">webin\u00e1rio anterior<\/a> com fam\u00edlias e profissionais.<\/p>\n<p>Encontre mais recursos adicionais em nosso <a href=\"https:\/\/deepconnections.net\/resource-center-main\/\">Centro de recursos<\/a><\/p>\n<p>Para mais recursos DEE, confira nosso&nbsp;<a href=\"https:\/\/deepconnections.net\/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\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: Defici\u00eancia Visual Cortical nas Epilepsias Raras (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\/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 v28.5) - 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