Meet Emily Kramer-Golinkoff, Co-Founder of Emily’s Entourage.
With her family and friends, she launched Emily’s Entourage in 2011,
to speed research and drug development for nonsense mutations of Cystic Fibrosis.
What drew you to Emily’s Entourage originally? And how has Emily’s Entourage changed since?
We started Emily’s Entourage because we saw a huge unmet need in the Cystic Fibrosis community. There are game-changing breakthroughs for roughly 90% of the CF community, but with 2 copies of a rare form of Cystic Fibrosis (called “a nonsense mutation”), I happened to fall in the outlying 10% that does not benefit from these revolutionary advances. To make matters worse, with a fatal disease like Cystic Fibrosis, we recognized that time was of the essence and we didn’t have time to wait for the traditional drug development process. So, we took matters into our own hands, launching Emily’s Entourage to speed research and drug development for nonsense mutations of Cystic Fibrosis.
Before working at Emily’s Entourage, what was the most unusual or interesting job you’ve ever had?
As a young kid, my next door neighbor and I demonstrated true entrepreneurship when we decided to build a business selling a new type of pet—fireflies! We’d go around in the evenings catching fireflies and then sell them to the people in our neighborhood who for some reason, out of the kindness of their hearts, humored us by actually purchasing the fireflies.
How has Emily’s Entourage helped you in your career development?
I never imagined that I’d find myself starting a foundation to accelerate the research and drug development that just might save my life and the lives of thousands of people like me. But I’ve learned that life takes us on all sorts of unplanned twists and turns. Instead of bemoaning that which you can’t change, you get a lot farther by embracing the swerves and focusing on always moving forward. Sometimes the unexpected journeys end up being the most beautiful!
What are 3 words to describe Emily’s Entourage?
Entrepreneurial. Goal oriented. Urgent.
What has been your favorite project at Emily’s Entourage?
Our laser focus at Emily’s Entourage is on accelerating research and drug development. In September 2018, we hosted our 3rd scientific symposium. Nearly 50 of the top CF scientists from around the world convened in Philadelphia to pool their incredible brain power and strategize ways to speed drug development for nonsense mutations of CF. It was an incredible feeling to have RSVPs from the foremost leaders in the field all come back as YES. It was in that moment that it became clear that Emily’s Entourage was a real player in the space, that we had arrived, and that the scientific world was listening.
Another favorite project is our Emily’s Entourage Champions campaign, where young professionals leverage their networks to raise $1,500 to support the Emily’s Entourage mission in conjunction with our Philadelphia and NYC galas. We recognize these philanthropic individuals at our gala and award the Champion of the Year trophy to the individual who raises the most. What I love so much about this campaign is that it embodies the EE spirit. Young professionals step up in the most admirable ways, tapping into their social networks to raise funds and help find breakthroughs and a cure for CF. It shows that change starts with just one person with the courage to stick their neck out and believe that it can be better, and that together, we are powerful and capable of changing the world.
What is your favorite part about working for Emily’s Entourage?
I’m incredibly energized by EE’s entrepreneurial, innovative approach, and by the opportunity for direct impact. We are filling a critical gap, creating hope for the 10% of the CF community that has been left behind by the breakthroughs. And we are working against the clock. I believe everyone with CF deserves realistic hope for a future, and it gives me tremendous purpose to be able to devote my life to helping to secure that for 100% of the CF community—and doing it quickly.
What is your proudest moment at Emily’s Entourage?
It will be the day that a person with CF can take a new therapy that helps improve and/or extend his or her life and know that it exists thanks to the work of Emily’s Entourage.
Do you have a favorite newspaper, blog?
Lately, I’m obsessed with podcasts and specifically podcasts about entrepreneurs and industry innovators.
Favorite travel spot?
I love to travel. So many spots I love. Paris tops my list.
How do you define success?
Varies for each person. For me, it’s about impact and purpose.
If you had to eat one meal, every day for the rest of your life, what would it be?
It would definitely include raisins and lattes.
People would be surprised if they knew:
I wear a size 4.5 shoe.
What book did you read last?
I’m in the middle of “Moment of Lift” by my hero, Melinda Gates.
What did you want to be when growing up?
FBI agent. Talk show hostess. Constitutional lawyer. High-risk obstetrician. Ran the gamut!
What do you always want to try and never did?
Go to bed early.
What is the first concert you attended?
What is the first thing you would buy if you won the lottery?
A European vacay for my family!
What is your favorite thing to do in the area?
I love spending time outside in nature doing something active in the summer.
You’re happiest when?
Surrounded by my family.
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