{"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\/es_mx\/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>Presentaciones<\/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 del acceso a ensayos cl\u00ednicos y nuevos tratamientos en las EDE\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\/\">Red de epilepsia rara<\/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\tGestionando el viaje con su hijo complejo\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>Para obtener m\u00e1s informaci\u00f3n sobre temas m\u00e9dicos, de atenci\u00f3n y apoyo o de investigaci\u00f3n para familias de DEE, visite nuestro <a href=\"https:\/\/deepconnections.net\/es_mx\/resource-center-main\/\">Centro de Recursos<\/a>.<\/p>\n\t\t\t\tDonaci\u00f3n de Cerebro: Qu\u00e9 considerar, c\u00f3mo funciona y c\u00f3mo puede ayudar\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\/\">Fundaci\u00f3n FamiliaSCN2A<\/a> y <a href=\"https:\/\/hope4harper.com\/\">Hope4Harper<\/a>.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"Donaci\u00f3n de Cerebro: Qu\u00e9 considerar, c\u00f3mo funciona y c\u00f3mo puede ayudar\" 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\/es_mx\/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\/es_mx\/resource-center-main\/\">Centro de Recursos<\/a><\/p>\n<p>Para obtener m\u00e1s recursos del DEE, consulte nuestro&nbsp;<a href=\"https:\/\/deepconnections.net\/es_mx\/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: 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>Para obtener m\u00e1s informaci\u00f3n sobre temas m\u00e9dicos, de atenci\u00f3n y apoyo o de investigaci\u00f3n para familias de DEE, visite nuestro <a href=\"https:\/\/deepconnections.net\/es_mx\/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 v28.2) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Therapies2 - DEE-P Information Resource Center<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/deepconnections.net\/es_mx\/care-and-family\/therapies2\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Therapies2\" \/>\n<meta property=\"og:description\" content=\"Therapies Information on therapies for those with DEEs WEBINARS AND VIDEOSDon&#039;t miss these informative webinars and videos that address important issues.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/deepconnections.net\/es_mx\/care-and-family\/therapies2\/\" \/>\n<meta property=\"og:site_name\" content=\"DEE-P Information Resource Center\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/DEEPConnectionsEpilepsy\" \/>\n<meta property=\"article:modified_time\" content=\"2024-07-17T17:29:16+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Screen-Shot-2024-03-08-at-7.55.04-AM.png\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data1\" content=\"2 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/deepconnections.net\\\/care-and-family\\\/therapies2\\\/\",\"url\":\"https:\\\/\\\/deepconnections.net\\\/care-and-family\\\/therapies2\\\/\",\"name\":\"Therapies2 - 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