L'Entourage d'Emily inaugure "La ligne magique" et lance la poussée vers le sommet final de la FC

Emily’s 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). “Cannot be done” is simply not an option.

But this year, EE grappled with the impossible. The global COVID pandemic put EE’s signature annual fundraising event in jeopardy. There would be no December gala, no live gathering of the EE community.

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—a 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, “The Magic Line,” served as the namesake and metaphor for EE’s campaign—representing the organization’s urgent mission to speed breakthroughs and a cure for the final 10% of the CF community without targeted therapies—the final summit of CF.

The Magic Line campaign launched on December 8, 2020 with a Virtual Video Premiere event featuring the debut of EE’s annual campaign video. Directed by Joanna Rudnick of Storied Studios, the video, also titled “La ligne magique,” shares the story of two women and one fatal disease. 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. “The Magic Line” highlights the fine, seemingly random line that dictates everything—even life and death. As the video makes clear, however, lines are not permanent. They are bendable and moveable.

The video is a powerful work of storytelling and a call to action. The questions heading into the premiere event were—in a year of immense external challenges—would 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?

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, making it one of the best-attended and most successful fundraising events in the history of EE.

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 “The Magic Line” 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’s Handmade Vodka, and Translate Bio.

Next, two adults with CF that are part of the “90%” benefiting from new life-saving therapies discussed how their lives completely transformed within days after starting treatment. Gunnar Esiason, an adult with CF, shared, “In a matter of seven-to-ten days, my life was unlocked. My life with Cystic Fibrosis changed enormously.”

It was a sentiment echoed by fellow CF adult Mary Frey. “The reality is still setting in that this is mine,” she said. “And that I have the opportunity to live.”

Their stories contrasted with those of the remaining “10%”, including Shelby Luebbert, an adult with CF, and Miguel Rodriguez Caveda, the parent of a child with CF.

“I’ve been so excited to see how this modulator is literally affecting every piece of their life,” said Shelby. “But to know that I’m not going to see those benefits….it is really bittersweet…You have to protect your heart.”

“When you see the [therapies] and see it’s not for you, you wonder why not us?” said Miguel. “When the proper breakthroughs come, that day — whenever it happens — it’s going to be the happiest day ever."

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 world-class alpinist Adrian Ballinger, 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.

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.

When Emily posited, “When you are getting to the peak, you’re up against time—there is no time to waste,” Adrian responded emphatically.

“There are a lot of parallels,” he said. “We have this time pressure of what the altitude is doing to your body and how it is breaking you down.”

And he also described the rewards of reaching K2’s summit.

“I remember joy, euphoria, and actually, happiness that I was never going to have to do this again…This was my one."

Next up was “The Magic Line” video debut, which underscored the urgency of the mission and provided a powerful segue into the evening’s keynote remarks.

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—while 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’s 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—lung 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%—like Emily—struggling every day to survive.

EE, said Emily, is fighting dur for the final 10%, awarding more than $4.8M in research grants since 2014,  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—which has never wavered—is 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. 

Coby returned to elicit a stirring call-to-action and the evening’s final fundraising push. The closing also included a thank-you to sponsors.

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) — 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!

Watch the full Virtual Video Premiere:

Emily’s 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—thank you for your passion, your vision, and your partnership. To those who joined for the first time on December 8, 2020—we welcome you with open arms.

Virtual Video Premiere Program Contributors

Program Host
Coby Kramer-Golinkoff

EE 2021 Campaign Video
Production Company: Storied Studios
Directed by: Joanna Rudnick
Original Artwork: Carly Klassen
Consulting Producer: Lindsey Rosin Passman
Contributing Producers: Marta and Robert Adelson, Jill and Mark Fishman, Marcia and Ned Kaplin Foundation, Eli and Paul Nierman Foundation
Music: Score a Score
Creative Director: Emily’s Entourage

Virtual Video Premiere Program
Special Guest: Adrian Ballinger
Editor: Patrick Zimmerman
Music: Score a Score

CF Community Members
Gunnar Esiason
Mary Frey
Carly Klassen
Shelby Luebbert
Miguel Angel Rodriguez