{"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_gt\/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>Esta es una grabaci\u00f3n del seminario web celebrado el 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>Randall Kaye, director m\u00e9dico de <a href=\"https:\/\/www.longboardpharma.com\/\">Productos farmac\u00e9uticos longboard<\/a> quien ha aplicado este modelo en su innovador dise\u00f1o de ensayo PAC\u00cdFICO de Fase I\/II, que inclu\u00eda todas las EDE.<\/p>\n<p>Este seminario web tambi\u00e9n se llev\u00f3 a cabo en asociaci\u00f3n con el <a href=\"https:\/\/www.rareepilepsynetwork.org\/\">Red de epilepsia rara<\/a>, representada por Christina SanInocencio, actual presidenta de REN.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"DEE-P: aumento del acceso a ensayos cl\u00ednicos y nuevos tratamientos en las 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 est\u00e1 abogando activamente ante la FDA para que apoye m\u00e1s a las compa\u00f1\u00edas farmac\u00e9uticas en la utilizaci\u00f3n de este modelo de prueba colectiva y damos la bienvenida a m\u00e1s familias para que ayuden a hablar sobre la necesidad de acelerar mejores tratamientos para docenas de epilepsias raras. Comun\u00edquese si desea participar: info@deepconnections.site<\/p>\n\t\t\t\tGestionando el viaje con su hijo complejo\n\t\t\t\t<p>En esta conversaci\u00f3n, conocer\u00e1 a Blyth Lord, madre de Cameron, quien ten\u00eda un trastorno gen\u00e9tico y falleci\u00f3 a la edad de 2 a\u00f1os. Ella es la fundadora de <a href=\"https:\/\/courageousparentsnetwork.org\/\">Red de padres valientes<\/a> as\u00ed como un nuevo recurso incre\u00edble: <a href=\"https:\/\/neurojourney.courageousparentsnetwork.org\/\">Neuroviaje<\/a>, que gu\u00eda a las familias de ni\u00f1os con discapacidades neurol\u00f3gicas graves (SNI) a trav\u00e9s de las muchas etapas que debemos afrontar al cuidar de nuestros hijos. NeuroJourney es una herramienta integral creada con cuidadores y profesionales para ayudar a las familias a navegar por las necesidades cambiantes de nuestro hijo, as\u00ed como por las decisiones complejas que podemos tener que enfrentar.<\/p>\n<p>Esta es una conversaci\u00f3n entre Blyth, cofundadora de DEE-P Connections y madre de DEE, Gabi Conecker y Chrissy Salley, psic\u00f3loga pedi\u00e1trica que trabaja con Courageous Parents Network y NeuroJourney.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"DEE-P: Introducci\u00f3n a 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_gt\/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>En esta importante discusi\u00f3n con madres con epilepsia poco com\u00fan que tomaron la decisi\u00f3n de donar el tejido cerebral de sus hijos al fallecer, analizamos una serie de elementos cr\u00edticos sobre esta decisi\u00f3n profundamente personal y dif\u00edcil, que incluyen: <\/p>\n<p>1. C\u00f3mo y por qu\u00e9 tomaron la decisi\u00f3n de donar <br \/>2. C\u00f3mo gestionar a los familiares que no entienden o no est\u00e1n de acuerdo <br \/>3. La log\u00edstica de la donaci\u00f3n <br \/>4. C\u00f3mo impacta la donaci\u00f3n en el funeral\/celebraci\u00f3n de la vida <br \/>Y m\u00e1s<\/p>\n<p>Nuestros invitados son Shelley Oldham, Angie Weaver y Penny Howard.<\/p>\n<p>Este seminario web se organiza en colaboraci\u00f3n con <a href=\"https:\/\/www.scn2a.org\/\">Fundaci\u00f3n FamiliaSCN2A<\/a> y <a href=\"https:\/\/hope4harper.com\/\">esperanza4harper<\/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>Tambi\u00e9n puede obtener m\u00e1s informaci\u00f3n sobre c\u00f3mo la donaci\u00f3n de cerebro juega un papel crucial en el avance de la investigaci\u00f3n y los avances cient\u00edficos y en la comprensi\u00f3n de las condiciones neurol\u00f3gicas en este <a href=\"https:\/\/deepconnections.net\/es_gt\/2022\/06\/27\/why-brain-tissue-donation-matters\/\">seminario web anterior<\/a> con familias y profesionales.<\/p>\n<p>Encuentre m\u00e1s recursos adicionales en nuestro <a href=\"https:\/\/deepconnections.net\/es_gt\/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_gt\/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) y encefalopat\u00edas epil\u00e9pticas y del desarrollo (EED)\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_gt\/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) - 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