{"id":770,"date":"2019-10-31T22:16:55","date_gmt":"2019-11-01T05:16:55","guid":{"rendered":"http:\/\/livingwithhibm.com\/?p=770"},"modified":"2019-10-31T22:16:56","modified_gmt":"2019-11-01T05:16:56","slug":"the-ndf-arts-gala","status":"publish","type":"post","link":"https:\/\/livingwithhibm.com\/?p=770","title":{"rendered":"The NDF ARTS GALA"},"content":{"rendered":"\n<p>I\u2019ll be be honest, it feels like there\u2019s a lot of darkness out there these days. The global state of affairs is increasingly unsettling. The continued threats from fires on a local level are increasingly terrifying. And on a more personal level, the black eye and bruised nose and chin I received a few days ago after slipping at the pool at my gym is a brutal reminder that danger is always lurking around the corner for me with this disease. (Don\u2019t worry, I\u2019m fine. CT ruled out facial fractures. On the bright side, I won\u2019t be needing face paint for Halloween tomorrow.)  <\/p>\n\n\n\n<p>I intended to write a blog post&nbsp;with this invitation,&nbsp;but I\u2019m just going to get straight to the bottom line: the NDF&nbsp;has always been and will continue to&nbsp;be my light in the darkness. It is where&nbsp;I find my hope and reassurance. It\u2019s what&nbsp;allows me to live my life and focus on adapting to and&nbsp;coping with this disease rather than having to invest&nbsp;all my&nbsp;emotional energy in&nbsp;trying to find a treatment or cure. The NDF is the balm that soothes my desperation whenever it sets in.&nbsp;<\/p>\n\n\n\n<p>This year\u2018s gala will once again be held at the Skirball. There&nbsp;will be beautiful art to view and purchase (partial proceeds will go to the NDF), &nbsp;a musical performance by Rana Mansour and two very funny and entertaining hosts, Billy Harris and Kvon.<\/p>\n\n\n\n<p>I know how incredibly busy life is these days. And I know there are so many causes&nbsp;worthy of your generosity. So how about this-&nbsp;if you want to get out for the evening, buy tickets and&nbsp;join me on Sunday night, November 17th.&nbsp;If you can\u2019t make it and&nbsp;you want to still contribute, we\u2019d be grateful for a&nbsp;donation of any amount. And if you are unable to make a financial&nbsp;contribution,&nbsp;feel free to spread the word&nbsp;to others in your community.<\/p>\n\n\n\n<p>No matter how much discomfort there is&nbsp;out&nbsp;in the world, I will always feel so incredibly lucky&nbsp;&nbsp;to have the comfort and support and love from so many family and friends.<\/p>\n\n\n\n<p>Thank you for that gift.<\/p>\n\n\n\n<p>Click&nbsp;&nbsp;here to purchase tickets\/donate<br \/><a href=\"https:\/\/ndfgala.ticketspice.com\/ndf-arts-gala\">https:\/\/ndfgala.ticketspice.com\/ndf-arts-gala<\/a><\/p>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>I\u2019ll be be honest, it feels like there\u2019s a lot of darkness out there these days. The global state of affairs is increasingly unsettling. The continued threats from fires on a local level are increasingly terrifying. And on a more personal level, the black eye and bruised nose and chin I received a few days<\/p>\n<div><a class=\"btn-filled btn\" href=\"https:\/\/livingwithhibm.com\/?p=770\" title=\"The NDF ARTS GALA\">Read More<\/a><\/div>\n","protected":false},"author":1,"featured_media":772,"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":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-770","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\/2019\/10\/img_7342.jpg?fit=735%2C1079&ssl=1","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5aYbC-cq","jetpack_likes_enabled":true,"jetpack-related-posts":[{"id":114,"url":"https:\/\/livingwithhibm.com\/?p=114","url_meta":{"origin":770,"position":0},"title":"My speech from this year&#8217;s NDF gala","author":"admin","date":"November 28, 2014","format":false,"excerpt":"I am so thankful for all the people who tirelessly dedicated themselves to making this year's NDF gala yet another successful event. You can click on the link below to watch my speech... \u00a0 My speech from this year's NDF gala 2014","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":770,"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":700,"url":"https:\/\/livingwithhibm.com\/?p=700","url_meta":{"origin":770,"position":2},"title":"Thankful for you. Please, let\u2019s keep it up.","author":"admin","date":"November 23, 2018","format":false,"excerpt":"On Sunday night, November 11th, the Neuromuscular Disease Foundation hosted its most successful event to date. The Gala for the Arts was a sold out evening that brought together\u00a0exquisite\u00a0art and\u00a0beautiful music. It was an opportunity to celebrate\u00a0honorary\u00a0members of\u00a0the GNE Myopathy community\u00a0along with\u00a0the\u00a0exciting $2.5 million\u00a0matching grant the NDF recently\u00a0received from an\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\/11\/IMG_2446.jpg?fit=800%2C533&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2018\/11\/IMG_2446.jpg?fit=800%2C533&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2018\/11\/IMG_2446.jpg?fit=800%2C533&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2018\/11\/IMG_2446.jpg?fit=800%2C533&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":30,"url":"https:\/\/livingwithhibm.com\/?p=30","url_meta":{"origin":770,"position":3},"title":"Jennifer&#8217;s NDF-HADASSAH Speech from the Fundraising Gala for HIBM Resear&#8230;","author":"admin","date":"February 22, 2012","format":false,"excerpt":"","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/02\/speech3.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/02\/speech3.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/02\/speech3.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2012\/02\/speech3.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":691,"url":"https:\/\/livingwithhibm.com\/?p=691","url_meta":{"origin":770,"position":4},"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":[]},{"id":57,"url":"https:\/\/livingwithhibm.com\/?p=57","url_meta":{"origin":770,"position":5},"title":"Darkness and Light","author":"admin","date":"August 30, 2014","format":false,"excerpt":"A few weeks ago\u00a0my sister, who has been tirelessly dedicating herself to planning this year's NDF gala in November, asked me if I'd be willing to speak at it. \u00a0I\u00a0told her that of course I would. That I am always willing to\u00a0contribute in any way\u00a0she or the Board thinks would\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\/10\/stairs.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/10\/stairs.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/10\/stairs.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/10\/stairs.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]}],"_links":{"self":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/770","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=770"}],"version-history":[{"count":1,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/770\/revisions"}],"predecessor-version":[{"id":771,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/770\/revisions\/771"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/media\/772"}],"wp:attachment":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=770"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=770"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=770"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}