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16 Dec 2013
0

An Evening with Emily’s Entourage: A Recap

Our second annual “Evening with Emily’s Entourage” was hosted on December 7th and we cannot begin to put into words how magical it was.  We want to start by thanking all of you — the Entourage. Without you, we would not be where we are today. Material Culture had more love than they’ve ever seen before. The room was filled with emotion, support, happiness and hope. The night was nothing short of a huge success!

From an incredible auction, to delicious food, to an entertaining social media wall, and the most unique and accommodating venue, the evening was perfect.  But, what made the night most perfect were the people that filled the room – in person and in spirit. It is their support, relentless commitment and unbelievable generosity that define and drive Emily’s Entourage. We knew it before, but the evening was a powerful reminder that we truly have THE BEST entourage in the world!

The highlight of the night was a speech from our inspiration, Emily Kramer-Golinkoff. Starting with a story from childhood and her parent’s ability to turn treatments into fun, Emily captivated the audience from the second she stepped on the stage. Emily described how her approach to maintain a well-balanced approach to life allowed her to feed her mind and her body, developing a life that was defined by so much more than her disease.

But despite what it may look like from the outside, Emily’s lung function is decreasing and, as she described in her speech, her boat is beginning to leak.

The night was spectacular, happy, joyous and inspiring but also filled with a sense of urgency.

Despite all Emily does to stay healthy she has advanced-stage Cystic Fibrosis. In addition, while there has been remarkable progress with CF research and drug development, unfortunately none of the new breakthroughs help Emily, who unfortunately falls in the currently untreatable 6 percent.

The night featured speeches from an extraordinary group of people. For the second year in a row, we were honored to have food personality and author of Fast Fresh + Simple, Hope Cohen, emcee the evening, which began with surprise recognition from the U.S. Senate and Pennsylvania Senator Daylin Leach. Author of The Power of Citizenship and a good friend of Emily’s, Scott Reich gave an energizing talk about the power of each individual to draw on his or her own talents to make a difference in the world. Coby and Julia (Emily’s siblings) followed with a progress update from the past year and a short video highlighting EE’s presence on college campuses across the country. The night continued with EE Board Member Juliet Spitzer asking every attendee to reach into their hearts, pockets and networks to help accelerate research and spread the EE message far and wide. Finally, Emily’s parents, Liza and Michael, concluded the program with a heartfelt thank you to all EE supporters.

The most important message from the evening was that the only thing that stands between Emily and her lifesaver is research. Money drives research and research holds the only hope of saving the lives of Emily and everyone with CF who is still awaiting their lifesaver.

That is where our wonderful Emily’s Entourage supporters come in. We can’t do Emily’s treatments or fight her infections or stop her disease progression, but we can advocate,  support, and ultimately bridge the gap between hope and a cure. You have propelled us to a level of success we never could have imagined, and now it’s up to us to race to the finish line.

The evening was a reminder of how far we’ve come but also how much we all have left to do together. The finish line is in sight and we will not stop until there is a cure for everyone living with this devastating disease.

A huge thank you to everyone who is part of our incredible entourage. You are our essence and light and we thank you for your continued commitment to giving everyone with CF the deep breath they so desperately need and deserve.

We look forward to see what’s to come and we’ll see you all next December!

THANK YOU to everyone who attended, supported and volunteered at an Evening with Emily’s Entourage and helped us raise over $69,000 for Cystic Fibrosis research – please click HERE to view photos from the evening!

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  • Home
  • Emily’s Story
  • About Us
    ▼
    • Our Mission
    • Our Approach
    • Our Impact
      ▼
      • 2019 Impact Report
    • Cystic Fibrosis
    • Meet Our Leadership
      ▼
      • Scientific Advisory Board
      • Board of Directors
      • Leadership Team
    • Partner Organizations
  • Research
    ▼
    • Areas of Focus
    • Awarded Grants
    • Publications
    • Patient Registry: CF Nonsense Mutation
    • For Researchers
      ▼
      • Research Resources
      • Research Inquiries
      • Funding Opportunities
  • Events
    ▼
    • Signature Events
      ▼
      • 2020 Year End Campaign
      • EENY: LIVE! Virtual Benefit
    • Events & Activities
  • Press & Media
    ▼
    • EE in the News
    • Press Releases
      ▼
      • EE Launches First Virtual Benefit
      • Spirovant Acquisition
      • FDA Approval of Trikafta
    • Awards
    • Videos
  • Take action
    ▼
    • Donate to Emily’s Entourage
      ▼
      • Donate Now
      • Other Ways to Give
    • Get Involved
      ▼
      • Sign Up for Updates
    • Fundraise
      ▼
      • Start Your Fundraiser
      • What You Can Do
    • Shop EE
  • Blog
  • Contact Us