{"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\/zh_hk\/care-and-family\/therapies2\/","title":{"rendered":"Therapies2"},"content":{"rendered":"<h1>\n\t\t\u7642\u6cd5\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>\u6f14\u8b1b<\/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\t\u589e\u52a0 DEE \u4e2d\u81e8\u5e8a\u8a66\u9a57\u548c\u65b0\u7642\u6cd5\u7684\u53ef\u53ca\u6027\n\t\t\t\t<p>\u9019\u662f 2024 \u5e74 4 \u6708 29 \u65e5\u8209\u884c\u7684\u7db2\u8def\u7814\u8a0e\u6703\u7684\u9304\u97f3\u3002<\/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>\u8207\u6211\u5011\u4e00\u8d77\u8a0e\u8ad6\u7672\u7647\u6cbb\u7642\u81e8\u5e8a\u8a66\u9a57\u4e2d\u7684\u9019\u7a2e\u65b0\u6a21\u578b\u7684\u662f Randall Kaye\uff0c\u4ed6\u662f <a href=\"https:\/\/www.longboardpharma.com\/\">\u9577\u677f\u88fd\u85e5\u516c\u53f8<\/a> \u4ed6\u5011\u5728\u5176\u5275\u65b0\u7684 I\/II \u671f PACIFIC \u8a66\u9a57\u8a2d\u8a08\u4e2d\u61c9\u7528\u4e86\u8a72\u6a21\u578b\uff0c\u5176\u4e2d\u5305\u62ec\u6240\u6709 DEE\u3002<\/p>\n<p>\u9019\u500b\u7db2\u8def\u7814\u8a0e\u6703\u4e5f\u662f\u8207 <a href=\"https:\/\/www.rareepilepsynetwork.org\/\">\u7f55\u898b\u7672\u7647\u7db2\u7d61<\/a>\uff0c\u7531\u73fe\u4efb REN \u4e3b\u5e2d Christina SanInocencio \u4ee3\u8868\u3002<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"DEE-P\uff1a\u589e\u52a0 DEE \u4e2d\u81e8\u5e8a\u8a66\u9a57\u548c\u65b0\u7642\u6cd5\u7684\u53ef\u53ca\u6027\" 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 \u6b63\u5728\u7a4d\u6975\u5411 FDA \u5021\u5c0e\uff0c\u66f4\u591a\u5730\u652f\u6301\u88fd\u85e5\u516c\u53f8\u5229\u7528\u9019\u4e00\u7c43\u5b50\u8a66\u9a57\u6a21\u5f0f\uff0c\u6211\u5011\u6b61\u8fce\u66f4\u591a\u7684\u5bb6\u5ead\u5e6b\u52a9\u8aaa\u51fa\u52a0\u5feb\u6539\u9032\u6578\u5341\u7a2e\u7f55\u898b\u7672\u7647\u6cbb\u7642\u7684\u5fc5\u8981\u6027\u3002\u5982\u679c\u60a8\u60f3\u53c3\u8207\uff0c\u8acb\u806f\u7d61 \u2013 info@deepconnections.site<\/p>\n\t\t\t\t\u7ba1\u7406\u8907\u96dc\u5b69\u5b50\u7684\u65c5\u7a0b\n\t\t\t\t<p>\u5728\u9019\u6b21\u5c0d\u8a71\u4e2d\uff0c\u60a8\u5c07\u9047\u5230 Blyth Lord\u2014\u2014\u5361\u6885\u502b\u7684\u6bcd\u89aa\uff0c\u5979\u60a3\u6709\u907a\u50b3\u6027\u75be\u75c5\u4e26\u5728 2 \u6b72\u6642\u53bb\u4e16\u3002 <a href=\"https:\/\/courageousparentsnetwork.org\/\">\u52c7\u6562\u7684\u7236\u6bcd\u7db2\u7d61<\/a> \u4ee5\u53ca\u4ee4\u4eba\u96e3\u4ee5\u7f6e\u4fe1\u7684\u65b0\u8cc7\u6e90 \u2013 <a href=\"https:\/\/neurojourney.courageousparentsnetwork.org\/\">\u795e\u7d93\u4e4b\u65c5<\/a>\uff0c\u5b83\u6307\u5c0e\u60a3\u6709\u56b4\u91cd\u795e\u7d93\u640d\u50b7 (SNI) \u7684\u5152\u7ae5\u7684\u5bb6\u5ead\u7d93\u6b77\u6211\u5011\u5728\u7167\u9867\u5b69\u5b50\u6642\u5fc5\u9808\u9762\u5c0d\u7684\u8a31\u591a\u968e\u6bb5\u3002 NeuroJourney \u662f\u4e00\u6b3e\u7531\u7167\u8b77\u8005\u548c\u5c08\u696d\u4eba\u58eb\u5171\u540c\u5efa\u69cb\u7684\u7d9c\u5408\u5de5\u5177\uff0c\u53ef\u5e6b\u52a9\u5bb6\u5ead\u61c9\u5c0d\u5b69\u5b50\u4e0d\u65b7\u8b8a\u5316\u7684\u9700\u6c42\u4ee5\u53ca\u6211\u5011\u53ef\u80fd\u5fc5\u9808\u9762\u5c0d\u7684\u8907\u96dc\u6c7a\u5b9a\u3002<\/p>\n<p>\u9019\u662f DEE-P Connections \u806f\u5408\u5275\u59cb\u4eba Blyth\u3001DEE \u5abd\u5abd Gabi Conecker \u548c Chrissy Salley\uff08\u8207\u52c7\u6562\u7236\u6bcd\u7db2\u7d61\u548c NeuroJourney \u5408\u4f5c\u7684\u5152\u79d1\u5fc3\u7406\u5b78\u5bb6\uff09\u4e4b\u9593\u7684\u5c0d\u8a71\u3002<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"DEE-P\uff1aNeuroJourney \u7c21\u4ecb\" 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>\u8981\u4e86\u89e3\u6709\u95dc DEE \u5bb6\u5ead\u7684\u91ab\u7642\u3001\u8b77\u7406\u548c\u652f\u6301\u6216\u7814\u7a76\u4e3b\u984c\u7684\u66f4\u591a\u4fe1\u606f\uff0c\u8acb\u8a2a\u554f\u6211\u5011\u7684 <a href=\"https:\/\/deepconnections.net\/zh_hk\/resource-center-main\/\">\u8cc7\u6e90\u4e2d\u5fc3<\/a>.<\/p>\n\t\t\t\t\u5927\u8166\u6350\u8d08\uff1a\u9700\u8981\u8003\u616e\u4ec0\u9ebc\u3001\u5982\u4f55\u904b\u4f5c\u3001\u5982\u4f55\u63d0\u4f9b\u5e6b\u52a9\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 Foundation<\/a> and <a href=\"https:\/\/hope4harper.com\/\">Hope4Harper<\/a>.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"\u5927\u8166\u6350\u8d08\uff1a\u9700\u8981\u8003\u616e\u4ec0\u9ebc\u3001\u5982\u4f55\u904b\u4f5c\u3001\u5982\u4f55\u63d0\u4f9b\u5e6b\u52a9\" 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\/zh_hk\/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\/zh_hk\/resource-center-main\/\">\u8cc7\u6e90\u4e2d\u5fc3<\/a><\/p>\n<p>\u5982\u9700\u66f4\u591a DEE \u8cc7\u6e90\uff0c\u8acb\u67e5\u770b\u6211\u5011\u7684&nbsp;<a href=\"https:\/\/deepconnections.net\/zh_hk\/resource-center-main\/\">\u8cc7\u6e90\u4e2d\u5fc3<\/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\uff1a\u7f55\u898b\u7672\u7647 (DEE) \u4e2d\u7684\u76ae\u8cea\u8996\u89ba\u969c\u7919\" 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>\u8981\u4e86\u89e3\u6709\u95dc DEE \u5bb6\u5ead\u7684\u91ab\u7642\u3001\u8b77\u7406\u548c\u652f\u6301\u6216\u7814\u7a76\u4e3b\u984c\u7684\u66f4\u591a\u4fe1\u606f\uff0c\u8acb\u8a2a\u554f\u6211\u5011\u7684 <a href=\"https:\/\/deepconnections.net\/zh_hk\/resource-center-main\/\">\u8cc7\u6e90\u4e2d\u5fc3<\/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. 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