Patient stories

Emily Kramer-Golinkoff: The Power of Storytelling

Photo courtesy of Cheyenne Gil

“You don’t have to be a billionaire to make a difference, you need an open heart and tenacity to make that change.”

Emily Kramer-Golinkoff, founder of internationally-acclaimed cystic fibrosis (CF) foundation Emily’s Entourage, is so enterprising that, she led the question line at the start of her interview with our team. Right off the bat, Emily sought to analyze how to craft her story in the best way to resonate with her interviewer.

In a way, Emily adopted her tenacity towards CF advocacy from her mom’s approach to Emily’s diagnosis. When Emily was just weeks old, her mom heard her cough one time and could tell “it just didn’t seem right”. Upon this single cough, her mom took initiative, called for her husband, and drove Emily directly from Pittsburgh (where they were visiting family friends) to a hospital in New York where they resided. In the first hospital visit, Emily underwent all sorts of testing. The doctors couldn’t figure out what was wrong. Still, Emily’s mom persisted. She consulted Dr. Spock and was advised to lick Emily’s skin to see if it was salty. Sure enough, it was. Finally, at six weeks old, Emily was formally tested and diagnosed with cystic fibrosis.

Despite a few hospitalizations and a few very rough bouts, Emily described her childhood as “incredibly normal”. Then, in college, Emily’s CF flared and she spent her first couple years juggling frequent hospital stays and IV antibiotics while remaining steadfastly focused on her academic studies and new friendships. Despite the significant challenges presented, Emily thrived in college, building life-long friendships and graduating on time and with honors.

Unfortunately, her health troubles did not end with college. Shortly after graduation, Emily was diagnosed with CF-related diabetes and permanently lost a large percentage of her lung function: all while trying to form a new identity that was not defined by CF.

Currently, with only 35% lung function, Emily has advanced stage disease. Emily explains how at this stage especially, “stability is the name of the game”. Exciting new treatments for CF are in the market and even more are on their way, but Emily has two copies of a nonsense genetic mutations causing CF and unfortunately none of these exciting new drugs benefit nonsense mutations. One can only imagine her heartbreak in 2011 as she watched her disease worsen without any hope in the drug development pipeline to grasp onto.

Emily with her mom, “an unsung hero behind Emily’s Entourage’s success”

Instead of giving up, Emily and her family did the exact opposite: in a “moment of activation,” they channeled their desperation into action and started Emily’s Entourage. “There wasn’t a group out there advocating for nonsense mutations [causing] CF. We were being left behind and we simply couldn’t sit with that.”.

Her family initially started Emily’s Entourage to be a one-time grassroots fundraising campaign. Six years later, with no prior fundraising experience, the team at Emily’s Entourage has raised nearly 3 million USD and funneled the funds towards accelerating research and drug development focused on nonsense mutations causing CF.

When asked how she manages to run such a successful non-profit, Emily passionately explains, “You throw yourself in, you learn crazy amounts, and you figure out things on the job — fast. There’s a certain kind of innovation and creativity that come when you’re working against the clock. …With CF, the clock is always ticking.”

Emily attributes the success of Emily’s Entourage to the whole team’s effort. When asked about her contribution to the team, she asserts, “I’m a strategic thinker, but at the end of the day, storytelling is my heart”.

Having completed both a Bachelor’s degree in Communications and a Master’s degree in Bioethics at the prestigious University of Pennsylvania, Emily has centered her life around leveraging aligned interests and synergies between researchers, patients, providers, and the public. “All the varying kinds of multimedia are just different platforms to tell your story and at the end of the day, it’s people and stories that move people to act,” she explains. Emily travels around the world speaking to a wide range of audiences — from TEDx and university commencement talks to presentations at medical and scientific conferences.

One story she told us was about how she got the opportunity to talk at the sorority Sigma Delta Tau (SDT) centennial convention in New York City. At a networking dinner meeting in DC hosted by a member of Emily’s Entourage, Emily met a college student at George Washington University. “She heard my story, was deeply touched, and once she realized we were both in in the same sorority (Sigma Delta Tau), she pledged to find a way to get SDT involved in Emily’s Entourage,” Emily recalls. Emily’s new friend knew the sorority’s centennial celebration was soon approaching. So, she reached out to the SDT national board, shared Emily’s story and got her the invitation to attend the centennial convention as a keynote speaker to an audience of over 500 people. “The fact that a college student opened her heart, took it upon herself to make a difference, and succeeded — in a big way — was really moving to me,” Emily proudly states.

Emily explains that this college student embodies the Emily’s Entourage spirit. And it pays off: Emily’s Entourage has been lauded for its efforts by impressive mainstream news media such as PeopleNBCCNN, and Time Magazine. Emily was even namea White House “Champion of Change” for President Obama’s Precision Medicine Initiative. In Emily’s eyes, “you don’t have be a billionaire to make a difference, you need an open heart and tenacity to make that change.”

You can follow Emily’s Entourage here:
Facebook: @EmilysEntourage
Instagram: @emilysentourage
Twitter: @emilysentourage
Snapchat: @emilysentourage

Other experiences from

Share this story

Share on facebook
Share on twitter
Share on linkedin

Latest stories

Patience stories and blog for Proteostasis_Therapeutics_Inc_biotech_company_cystic fibrosis

Community blog

Our Community Column is a home for thoughts and opinions of members across the cystic fibrosis community. Sometimes serious, every so often lighthearted, but always engaging. It is our duty and privilege to listen to these stories and to share them with others.