{"id":139,"date":"2015-03-04T22:12:44","date_gmt":"2015-03-05T06:12:44","guid":{"rendered":"http:\/\/livingwithhibm.com\/?p=139"},"modified":"2017-11-18T19:37:27","modified_gmt":"2017-11-19T03:37:27","slug":"sanford-burnham-rare-disease-day-symposium-speech-22715","status":"publish","type":"post","link":"https:\/\/livingwithhibm.com\/?p=139","title":{"rendered":"Sanford Burnham Rare Disease Day Symposium speech 2\/27\/15"},"content":{"rendered":"<p>I debated posting\u00a0this most recent speech titled, &#8220;Letting Go While Holding On&#8221; from the Sanford Burnham Rare Disease Day Symposium in San Diego last Friday. Partially because I did a fair amount of cutting and pasting from past speeches and partially because I actually fumbled a few times (I know, the horror). But I know I must use any opportunity I can to put our message out there.<\/p>\n<p><!--more--><\/p>\n<p>It&#8217;s funny, I always worry just before I go up that I may have become desensitized to the words I am reading and therefore unable to connect to them emotionally. It seems I have yet for this to be the case&#8230;<\/p>\n<div class=\"jetpack-video-wrapper\"><span class=\"embed-youtube\" style=\"text-align:center; display: block;\"><iframe loading=\"lazy\" class=\"youtube-player\" width=\"1140\" height=\"642\" src=\"https:\/\/www.youtube.com\/embed\/h2GgHqG7Cas?version=3&#038;rel=1&#038;showsearch=0&#038;showinfo=1&#038;iv_load_policy=1&#038;fs=1&#038;hl=en-US&#038;autohide=2&#038;wmode=transparent\" allowfullscreen=\"true\" style=\"border:0;\" sandbox=\"allow-scripts allow-same-origin allow-popups allow-presentation allow-popups-to-escape-sandbox\"><\/iframe><\/span><\/div>\n","protected":false},"excerpt":{"rendered":"<p>I debated posting\u00a0this most recent speech titled, &#8220;Letting Go While Holding On&#8221; from the Sanford Burnham Rare Disease Day Symposium in San Diego last Friday. Partially because I did a fair amount of cutting and pasting from past speeches and partially because I actually fumbled a few times (I know, the horror). But I know<\/p>\n<div><a class=\"btn-filled btn\" href=\"https:\/\/livingwithhibm.com\/?p=139\" title=\"Sanford Burnham Rare Disease Day Symposium speech 2\/27\/15\">Read More<\/a><\/div>\n","protected":false},"author":1,"featured_media":425,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-139","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"aioseo_notices":[],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/08\/chroma.jpg?fit=730%2C350&ssl=1","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5aYbC-2f","jetpack_likes_enabled":true,"jetpack-related-posts":[{"id":29,"url":"https:\/\/livingwithhibm.com\/?p=29","url_meta":{"origin":139,"position":0},"title":"My Holiday","author":"admin","date":"February 29, 2012","format":false,"excerpt":"Today is Rare Disease Day. And despite all of the talking, sharing, writing and public speaking I do about my rare disease, HIBM, it is still hard to believe that I actually have one. I still can't fully take in the fact that I have a disease that only a\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/mic2.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/mic2.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/mic2.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/06\/mic2.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":14,"url":"https:\/\/livingwithhibm.com\/?p=14","url_meta":{"origin":139,"position":1},"title":"My speech from this year&#8217;s NDF Gala","author":"admin","date":"November 14, 2013","format":false,"excerpt":"Below is the link to the speech I gave as an honoree at this year's NDF Gala at the Beverly Hills Hotel on October 17th, 2013. It was an incredibly successful event, selling out to over 600 guests and raising almost half a million dollars. \u00a0Thank you to everyone who\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/11\/speech4.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/11\/speech4.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/11\/speech4.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/11\/speech4.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":254,"url":"https:\/\/livingwithhibm.com\/?p=254","url_meta":{"origin":139,"position":2},"title":"Coming clean","author":"admin","date":"September 1, 2016","format":false,"excerpt":"Tonight the Neuromuscular Disease Foundation hosted a dinner party to celebrate its 10 year anniversary. It was an opportunity to bring together scientists, researchers, NDF board members and patients living with HIBM. It was not a fundraiser, but rather an evening to thank everyone who's been involved over the years\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/09\/event_.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/09\/event_.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/09\/event_.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/09\/event_.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":366,"url":"https:\/\/livingwithhibm.com\/?p=366","url_meta":{"origin":139,"position":3},"title":"My Podcast interview for &#8220;Last Cut Conversations&#8221; with Samantha Paige","author":"admin","date":"September 6, 2017","format":false,"excerpt":"Two weeks ago I attended the Neuromuscular Disease Foundation's 4th annual patient symposium. Though I thought I'd be ready to blog about it by now, it turns out my mind is still busy unpacking all of my thoughts and feelings around it. There was the collective grieving of the failed\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/09\/lastcut.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/09\/lastcut.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/09\/lastcut.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/09\/lastcut.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":36,"url":"https:\/\/livingwithhibm.com\/?p=36","url_meta":{"origin":139,"position":4},"title":"It&#8217;s My Birthday","author":"admin","date":"June 21, 2011","format":false,"excerpt":"I have never blogged before. Maybe because it felt exhibitionistic or maybe because doing so presumes people will be interested in what I have to say. But recently, I have felt a need, an urgent and desperate need to express myself- to share what's going on with me and my\u2026","rel":"","context":"With 5 comments","block_context":{"text":"With 5 comments","link":"https:\/\/livingwithhibm.com\/?p=36#comments"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2011\/06\/candle.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2011\/06\/candle.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2011\/06\/candle.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2011\/06\/candle.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":691,"url":"https:\/\/livingwithhibm.com\/?p=691","url_meta":{"origin":139,"position":5},"title":"Desperation, Hope and a Plea","author":"admin","date":"October 9, 2018","format":false,"excerpt":"I\u2019m going to keep this post short and to the point because I need your attention now more than ever. In fact, I need your help. A few weeks ago, I attended the 5th annual Neuromuscular Disease Foundation symposium, which brought together patients and scientists from around the world. It\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2018\/10\/img_1719.jpg?fit=362%2C200&ssl=1&resize=350%2C200","width":350,"height":200},"classes":[]}],"_links":{"self":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/139","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=139"}],"version-history":[{"count":9,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/139\/revisions"}],"predecessor-version":[{"id":483,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/139\/revisions\/483"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/media\/425"}],"wp:attachment":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=139"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=139"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=139"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}