Sammanfattning: 2017 års Evening with Emily's Entourage-gala

We are still floating back to earth from an otherworldly, dazzling evening that was the 2017 Evening With Emily’s Entourage! This gala—our sixth—was truly breathtaking.

Anthropologie, the official 2017 Decor Sponsor, joined forces with our longtime design geniuses the Boston sisters to transform our gala space–Moulin at Sherman Mills–into a galactic spacescape! Inspired by the beautiful invitation designed by Brownstein Group and complementing website from our friends at Strategic Websites, zoomed-in images of Emily’s cells were projected onto the walls of a chic seating area and a starry glass centerpiece hung over the dinner tables. You had to see it to believe it!

Guests spent their time taking photos at the Hill-Rom social media station, enjoying a delicious dinner by Brulee Catering at Moulin, grabbing a drink generously provided by Tito’s Vodka and Yards Brewing Company at a custom bar with ‘EE’ etched into the wood panel, and perusing our biggest silent auction yet!

When it was time for our program to begin, it was standing room only, and for the first time, Emily’s brother, Coby Kramer-Golinkoff, was the evening’s emcee! He started by thanking our incredible corporate sponsors–Vertex Pharmaceuticals, Firstrust and Eloxx Pharmaceuticals and our in kind donors–Strategic Websites, Moulin at Sherman Mills, Brulee Catering, Anthropolgie and the Brownstein Group.

Coby introduced the evening’s honorary chairs, Mariann and Greg Reh, and his parents, Liza Kramer and Michael Golinkoff, to share a few words.

Coby then brought to the stage our EE Champions–young professionals, nominated for their philanthropic spirit, who set ambitious fundraising goals to bring us closer to finding a cure to Cystic Fibrosis.

 

The Champions went above and beyond the call, raising an earth-shattering $33,828!!! Awards were given to Belle Starr, EE’s “Youngest Champion Ever” at age 7; Ted and Kendra Oxholm for being the first “Longest Running Champion”; and to the brother-sister “Champion of the Year” team of Paula and Robert Barg, who raised the most this year!

Next, Paul Negulescu, PhD accepted EE’s first “Trailblazer Award” on behalf of Vertex Pharmaceuticals, a longtime sponsor and supporter of EE’s work. He spoke about the ways in which and science and innovation intersect to deliver encouraging prospects.

He ended his remarks by proclaiming that his acceptance of the Trailblazer Award was not for the groundbreaking work Vertex has already done, but instead as a pledge to the work they still have to do. 

As always, the Kramer-Golinkoff siblings delivered heartfelt speeches, driving home the urgency and importance of EE’s work. Emily’s sister, Julia, shared her story of a tough decision to forgo world travel to be by Emily’s side, and Coby shared how deeply rewarding a simple act of kindness feels.

Emily took the stage to speak to the 450+ people in the room as well as thousands of people watching live on Facebook and Instagram. Emily shared a metaphor of a search and rescue mission where nine people are saved and one is left behind. Emily and the other people with two copies of a nonsense mutation of CF, she explained, are the 10% of people behind left behind by advances that are coming in the next couple of years for 90% of the CF population — but not for Emily.

Coby started the countdown clock: five minutes to raise the critical funds to spur Emily’s Entourage ambitious research plan to save the final 10%. We watched the donation thermometer rise in real time as each critical dollar poured in from the guests in the room and people watching online alike. A surge of excitement hit when we learned that Erin Shanahan and Joel Nierman of the Eli and Pauline Nierman Family Foundation had contributed a $10,000 matching grant in of their son, who shares Emily’s nonsense mutation.

As the time ticked to a close, we took a collective inhale-because the thermometer showed that we had raised a record breaking, goal smashing, earth shattering $470,000, officially launching the 2018 campaign

With the energy in the room at an all-time high, a group of breakdancers, I AM Talent, rushed the stage! They leapt and jumped and slid—and then they invited Emily and Julia to be part of their final trick!

The night, in every way, was pure perfection—a testament to the power of every individual in that room. We feel blown away by the commitment of this tireless Entourage.

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What’s Next?

DU missed the Gala? Check out our the video recap here.

DU can watch our 2018 campaign video: debuted at the gala, it provides a powerful summary of EE’s work and plans for the future. Se videon här.

DU can share our video and social media posts with your own networks, helping us increase the power of our Entourage and bring new people into it! Share on Facebook.

DU can donate: contribute the funds that will send us even further skyward as we race to raise the funds to help Emily and so many like her. Donera här.

DU can see for yourself what an epic evening it was view the Gala Facebook photo album.  

DU can join us at next year’s gala: request to be added to the gala invite list and/or volunteer on the gala event committee or at the gala. Skicka e-post till oss.

To those who have been with us since the beginning—thank you for your energy, your boundlessly generous support, and your belief. To those who are joining us for the very first time—we welcome you with open arms. To infinitEE and beyond!