{"id":15221,"date":"2021-02-02T15:50:46","date_gmt":"2021-02-02T20:50:46","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=15221"},"modified":"2021-02-02T15:52:01","modified_gmt":"2021-02-02T20:52:01","slug":"emilys-entourage-debuts-the-magic-line-launches-push-to-the-final-summit-of-cf","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/it\/emilys-entourage-debuts-the-magic-line-launches-push-to-the-final-summit-of-cf\/","title":{"rendered":"L'Entourage di Emily debutta con \"La linea magica\" e lancia la spinta verso il vertice finale di FC"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">Emily\u2019s Entourage (EE) has never shied away from a challenge. That is to be expected for an organization that is speeding life-saving research and drug development for those with nonsense mutations of Cystic Fibrosis (CF). \u201cCannot be done&#8221; is simply not an option.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">But this year, EE grappled with the impossible. The global COVID pandemic put EE\u2019s signature annual fundraising event in jeopardy. There would be no December gala, no live gathering of the EE community.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">As that reality took hold over the summer, EE pivoted and took a leap of faith, creating a virtual, month-long, multi-media campaign inspired by another seemingly impossible challenge\u2014a winter ascent of K2 without supplemental oxygen. K2 is the last of the most elite, 8,000+ meter mountains to be summited in winter. One of the most famous routes up K2, \u201cThe Magic Line,\u201d served as the namesake and metaphor for EE\u2019s campaign\u2014representing the organization\u2019s urgent mission to speed breakthroughs and a cure for the final 10% of the CF community without targeted therapies\u2014the final summit of CF.<\/span><\/p>\n<p style=\"text-align: left;\"><span style=\"font-weight: 400;\">The Magic Line campaign launched on December 8, 2020 with a Virtual Video Premiere event featuring the debut of <a href=\"https:\/\/www.youtube.com\/watch?v=XtyxPqIXA80&amp;feature=emb_logo\" target=\"_blank\" rel=\"noopener\">EE\u2019s annual campaign video<\/a>. Directed by Joanna Rudnick of Storied Studios, the video, also titled &#8220;<\/span><span style=\"font-weight: 400;\">The Magic Line<\/span><span style=\"font-weight: 400;\">,&#8221; shares the story of two women and one fatal disease. <\/span><span style=\"font-weight: 400;\">Their stories were the same, until one day, they were not. When a breakthrough drug gets approved for 90% of the CF community, one woman gets a second lease on life, while the other falls in the 10% that do not. &#8220;<\/span><span style=\"font-weight: 400;\">The Magic Line&#8221; <\/span><span style=\"font-weight: 400;\">highlights the fine, seemingly random line that dictates everything\u2014even life and death. As the video makes clear, however, lines are not permanent. They are bendable and moveable.<\/span><\/p>\n<p><iframe title=\"Emily&#039;s Entourage: The Magic Line\" width=\"960\" height=\"540\" src=\"https:\/\/www.youtube.com\/embed\/XtyxPqIXA80?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen><\/iframe><\/p>\n<p>The video is a powerful work of storytelling and a call to action. The questions heading into the premiere event were\u2014in a year of immense external challenges\u2014would there be enough of a virtual audience to heed and spread the message? Would EE achieve its fundraising goals to continue its aggressive investment in research and drug development?<\/p>\n<p><span style=\"font-weight: 400;\">These questions were answered quickly and emphatically, as more than 1,000 people from around the world signed up to attend and support the Virtual Video Premiere,<\/span><span style=\"font-weight: 400;\"> making it one of the best-attended and most successful fundraising events in the history of EE.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">And while the video was certainly the highlight, the evening featured an array of captivating original programming. First came a warm welcome from emcee Coby Kramer-Golinkoff, EE board member and brother of fellow EE co-founder Emily Kramer-Golinkoff. Coby shared a brief history of the organization, introduced \u201cThe Magic Line\u201d campaign and offered heartfelt appreciation to sponsors that made the event possible, including presenting sponsor Vertex Pharmaceuticals, amethyst sponsor Mylan and violet sponsors Arrowhead Pharmaceuticals, Spirovant Sciences, Tito\u2019s Handmade Vodka, and Translate Bio.<\/span><\/p>\n<p><img fetchpriority=\"high\" decoding=\"async\" class=\"alignnone wp-image-15223 \" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-26-at-9.06.25-AM-1-e1612192712364-300x169.png\" alt=\"\" width=\"1385\" height=\"780\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-26-at-9.06.25-AM-1-e1612192712364-300x169.png 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-26-at-9.06.25-AM-1-e1612192712364-1024x578.png 1024w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-26-at-9.06.25-AM-1-e1612192712364-768x433.png 768w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-26-at-9.06.25-AM-1-e1612192712364-1536x866.png 1536w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-26-at-9.06.25-AM-1-e1612192712364-600x338.png 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-26-at-9.06.25-AM-1-e1612192712364.png 1897w\" sizes=\"(max-width: 1385px) 100vw, 1385px\" \/><\/p>\n<p><span style=\"font-weight: 400;\">Next, two adults with CF that are part of the \u201c90%\u201d benefiting from new life-saving therapies discussed how their lives completely transformed within days after starting treatment. <\/span><a href=\"https:\/\/vimeo.com\/493368724\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Gunnar Esiason, an adult with CF<\/span><\/a><span style=\"font-weight: 400;\">, shared, \u201cIn a matter of seven-to-ten days, my life was unlocked. My life with Cystic Fibrosis changed enormously.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">It was a sentiment <\/span><a href=\"https:\/\/vimeo.com\/493396722\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">echoed by fellow CF adult Mary Frey<\/span><\/a><span style=\"font-weight: 400;\">. \u201cThe reality is still setting in that this is mine,\u201d she said. \u201cAnd that I have the opportunity to live.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Their stories contrasted with those of the remaining \u201c10%\u201d, including <\/span><a href=\"https:\/\/vimeo.com\/493389826\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Shelby Luebbert<\/span><\/a><span style=\"font-weight: 400;\">, an adult with CF, and <\/span><a href=\"https:\/\/vimeo.com\/493373840\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Miguel Rodriguez Caveda<\/span><\/a><span style=\"font-weight: 400;\">, the parent of a child with CF.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cI\u2019ve been so excited to see how this modulator is literally affecting every piece of their life,\u201d said Shelby. \u201cBut to know that I\u2019m not going to see those benefits&#8230;.it is really bittersweet&#8230;You have to protect your heart.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cWhen you see the [therapies] and see it\u2019s not for you, you wonder why not us?\u201d said Miguel. \u201cWhen the proper breakthroughs come, that day &#8212; whenever it happens &#8212; it\u2019s going to be the happiest day <\/span><i><span style=\"font-weight: 400;\">ever<\/span><\/i><span style=\"font-weight: 400;\">.\u201d<\/span><\/p>\n<p><img decoding=\"async\" class=\"wp-image-15257 aligncenter\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-31-at-4.45.33-PM-1024x578.png\" alt=\"\" width=\"1385\" height=\"782\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-31-at-4.45.33-PM-1024x578.png 1024w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-31-at-4.45.33-PM-300x169.png 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-31-at-4.45.33-PM-768x434.png 768w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-31-at-4.45.33-PM-600x339.png 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-31-at-4.45.33-PM.png 1334w\" sizes=\"(max-width: 1385px) 100vw, 1385px\" \/><\/p>\n<p><span style=\"font-weight: 400;\">Coby returned to introduce a unique segment with a very special celebrity guest. Emily and her mother and EE co-founder, Liza Kramer, joined famed <a href=\"https:\/\/www.youtube.com\/watch?v=zlEDYZI2OGM\">world-class alpinist Adrian Ballinger<\/a>, one of four Americans to have ever summited K2, for an intimate interview and discussion about the challenges of climbing K2 and the parallels between his work and the push to the final summit of CF.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Adrian shared the struggle and fear that accompanies breathing at altitude without oxygen. He talked about the detailed, methodical steps in preparing for a climbing expedition and the inevitable time crunch when making the final summit push. And he emphasized the importance of favorable conditions and a little bit of luck in getting to the peak.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">When Emily posited, \u201cWhen you are getting to the peak, you\u2019re up against time\u2014there is no time to waste,\u201d Adrian responded emphatically.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cThere are a lot of parallels,\u201d he said. \u201cWe have this time pressure of what the altitude is doing to your body and how it is breaking you down.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">And he also described the rewards of reaching K2\u2019s summit.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cI remember joy, euphoria, and actually, happiness that I was never going to have to do this again&#8230;This was my <\/span><i><span style=\"font-weight: 400;\">one<\/span><\/i><span style=\"font-weight: 400;\">.\u201d<\/span><\/p>\n<p><img decoding=\"async\" class=\"wp-image-15261 aligncenter\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/AdrianDogleg1-300x214.jpg\" alt=\"\" width=\"1385\" height=\"988\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/AdrianDogleg1-300x214.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/AdrianDogleg1-1024x730.jpg 1024w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/AdrianDogleg1-768x548.jpg 768w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/AdrianDogleg1-1536x1096.jpg 1536w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/AdrianDogleg1-600x428.jpg 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/AdrianDogleg1.jpg 1594w\" sizes=\"(max-width: 1385px) 100vw, 1385px\" \/><br \/>\nNext up was &#8220;The Magic Line&#8221; video debut, which underscored the urgency of the mission and provided a powerful segue into the evening&#8217;s keynote remarks.<\/p>\n<p><span style=\"font-weight: 400;\">Emily offered a powerful and personal reflection of the impact that the remarkable new targeted drugs have had for so many of her friends in the CF community\u2014while contrasting their new possibilities with her own reality as part of the 10% that does not benefit. She shared journal entries from the father of a woman with CF, Taylor, recounting the miracles of regeneration and health unfolding in his daughter\u2019s life. Emily then revealed that at the same time Taylor was experiencing the extraordinary benefits of the new therapies, she was heading into the worst health crisis of her life\u2014lung failure triggered by the common cold. After a harrowing few months, she escaped that crisis, but the message was clear: 90% was not good enough if there are still 10%\u2014like Emily\u2014struggling every day to survive.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">EE, said Emily, is fighting <\/span>hard <span style=\"font-weight: 400;\">for the final 10%, awarding more than $4.8M in research grants since 2014,\u00a0 securing over $35.9 in follow on funding, awarding 21 research grants to top academic institutions that target wide-ranging and promising therapies. The goal\u2014which has never wavered\u2014is to turbocharge the development of life-saving breakthroughs for the final 10% of the CF community, nobody left behind. Finally, Emily shared that the CF summit is close, but the last part of the climb requires the strongest effort yet.\u00a0<\/span><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-15225 \" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-26-at-9.09.40-AM-1024x571.png\" alt=\"\" width=\"1385\" height=\"772\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-26-at-9.09.40-AM-1024x571.png 1024w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-26-at-9.09.40-AM-300x167.png 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-26-at-9.09.40-AM-768x428.png 768w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-26-at-9.09.40-AM-1536x857.png 1536w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-26-at-9.09.40-AM-600x335.png 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-26-at-9.09.40-AM.png 1918w\" sizes=\"(max-width: 1385px) 100vw, 1385px\" \/><\/p>\n<p><span style=\"font-weight: 400;\">Coby returned to elicit a stirring call-to-action and the evening\u2019s final fundraising push. The closing also included a thank-you to sponsors.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">All told, the premiere raised nearly $50,000 in less than an hour (part of a raise of more than $1M for the entire campaign and annual appeal) &#8212; an extraordinary outcome for a reimagined event during a global health crisis. The evening represented a giant step forward in the climb to the CF summit!<\/span><\/p>\n<p>Watch the full Virtual Video Premiere:<\/p>\n<p style=\"text-align: center;\"><iframe style=\"border: none; overflow: hidden;\" src=\"https:\/\/www.facebook.com\/plugins\/video.php?height=314&amp;href=https%3A%2F%2Fwww.facebook.com%2FEmilysEntourage%2Fvideos%2F2802867836622001%2F&amp;show_text=false&amp;width=560\" width=\"560\" height=\"314\" frameborder=\"0\" scrolling=\"no\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<p><i><span style=\"font-weight: 400;\">Emily\u2019s Entourage would like to thank everyone who made the Virtual Video Premiere Event possible: corporate sponsors, patrons, donors, registrants, speakers, producers, steering and planning committees, and more! To those who have been with us since the beginning\u2014thank you for your passion, your vision, and your partnership. To those who joined for the first time on December 8, 2020\u2014we welcome you with open arms.<br \/>\n<\/span><\/i><\/p>\n<p style=\"text-align: center;\"><strong>Virtual Video Premiere Program Contributors<\/strong><\/p>\n<p style=\"text-align: center;\"><strong>Program Host<br \/>\n<\/strong>Coby Kramer-Golinkoff<\/p>\n<p style=\"text-align: center;\"><strong>EE 2021 Campaign Video<br \/>\n<\/strong>Production Company: Storied Studios<br \/>\nDirected by: Joanna Rudnick<br \/>\nOriginal Artwork: Carly Klassen<br \/>\nConsulting Producer: Lindsey Rosin Passman<br \/>\nContributing Producers: Marta and Robert Adelson, Jill and Mark Fishman, Marcia and Ned Kaplin Foundation, Eli and Paul Nierman Foundation<br \/>\nMusic: Score a Score<br \/>\nCreative Director: Emily&#8217;s Entourage<\/p>\n<p style=\"text-align: center;\"><strong>Virtual Video Premiere Program<br \/>\n<\/strong>Special Guest: Adrian Ballinger<br \/>\nEditor: Patrick Zimmerman<br \/>\nMusic: Score a Score<\/p>\n<p style=\"text-align: center;\"><strong>CF Community Members<br \/>\n<\/strong>Gunnar Esiason<br \/>\nMary Frey<br \/>\nCarly Klassen<br \/>\nShelby Luebbert<br \/>\nMiguel Angel Rodriguez<\/p>\n<p><i><span style=\"font-weight: 400;\">\u00a0<\/span><\/i><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Emily's Entourage (EE) non si \u00e8 mai tirata indietro di fronte alle sfide. Questo \u00e8 prevedibile per un'organizzazione che accelera la ricerca e lo sviluppo di farmaci salvavita per le persone affette da mutazioni nonsense della fibrosi cistica (FC). \u201cNon si pu\u00f2 fare\u201d non \u00e8 un'opzione. Ma quest'anno EE ha affrontato l'impossibile. La pandemia globale COVID... <\/p>\n<div class=\"clear\"><\/div>\n<p><a href=\"https:\/\/www.emilysentourage.org\/it\/emilys-entourage-debuts-the-magic-line-launches-push-to-the-final-summit-of-cf\/\" class=\"excerpt-read-more\">Per saperne di pi\u00f9<\/a><\/p>","protected":false},"author":1281,"featured_media":15226,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"none","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-15221","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Screen-Shot-2021-01-26-at-5.26.52-PM.png","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/it\/wp-json\/wp\/v2\/posts\/15221","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/it\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/it\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/it\/wp-json\/wp\/v2\/users\/1281"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/it\/wp-json\/wp\/v2\/comments?post=15221"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/it\/wp-json\/wp\/v2\/posts\/15221\/revisions"}],"predecessor-version":[{"id":15621,"href":"https:\/\/www.emilysentourage.org\/it\/wp-json\/wp\/v2\/posts\/15221\/revisions\/15621"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/it\/wp-json\/wp\/v2\/media\/15226"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/it\/wp-json\/wp\/v2\/media?parent=15221"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/it\/wp-json\/wp\/v2\/categories?post=15221"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/it\/wp-json\/wp\/v2\/tags?post=15221"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}