Emily’s Entourage: College Students Rally to Cure Rare Form of Cystic Fibrosis

Emily Kramer-Golinkoff represents the best of the millennial generation. A 29-year old graduate of the University of Pennsylvania with a master’s degree in bio-ethics, she works full time in the Penn Social Media and Health Innovation. In her spare time, she orchestrates a non-profit organization that has raised over $640,000 in less than two and a half years.

That non-profit is eponymously named Emily’s Entourage and seeks a cure or control for Cystic Fibrosis, the disease that leaves Emily with 1/3 of the average lung function and dangling just above the threshold for end-stage CF. Emily dedicates four hours to medical treatment on healthy days and goes into the hospital when she’s sick for powerful antibiotics to help control the life-threatening infections ravaging her lungs; yet, she has made the time to make a difference.

In December 2011 in their suburban Philadelphia living room, desperate for breakthroughs to help extend her life, Emily and her family decided to launch Emily’s Entourage. In a little over two years since that conversation, Emily’s Entourage has burst onto the philanthropy scene courting donors across the country through a personal appeal made possible by social media and storytelling. In addition to national fundraising efforts, Emily’s Entourage has offshoots on six college campuses: Tulane University, New York University, University of Michigan, University of Arizona, University of Delaware, and Saint Joseph’s University have all joined the team to find a cure.

Emily’s brother Coby, now a Tulane graduate and Teach for America Corps member, spearheaded the college effort. In early 2012, he started a team to join him in bringing the cause to campus with no idea of what to expect. (Full disclosure: I was on the team.) They decided to appeal to student interests and “make doing good cool,” as Coby explained in a TEDx Talk, by hosting a party where a custom-designed Emily’s Entourage tank top served as the entrance ticket. The idea stuck.

They raised nearly $15,000 that first year. By the second year, one in six Tulane students owned an Emily’s Entourage tank top. The event, “A Night Out with Emily’s Entourage,” quickly became a highly anticipated campus staple featuring the best musical talent at Tulane and mobilizing hundreds of students to join the fight against Cystic Fibrosis. To stand in a room of nearly a thousand students all wearing the Emily’s Entourage tank was a surreal and deeply moving experience for everyone — and especially for Coby, for whom the cause was painfully personal.

On other campuses, the approach has been different. At the University of Michigan, students lobbied for Emily’s Entourage to be one of the charity beneficiaries, and sure enough, it was one of charities selected to receive over $6,000. Further embracing the cause, some sororities pledge classes have even collectively all purchased Emily’s Entourage tanks to show their support for the cause.

From the start, Emily’s Entourage is about the difference communities can make when they band together and rally behind a cause. People connect to Emily’s story, and — amazingly — they want to help. Not just the traditional philanthropists with millions of dollars, but everyday people — even notoriously apathetic and disengaged college students.

Jeff Schiffman, Tulane’s Senior Associate Director of Admission, notes “[Emily’s Entourage has] been a perfect example of an idea that started small and totally took off in a major way. It’s been amazing to see how committed our students have been to the cause.”

In two years, college campuses have donated over $50,000, led by Tulane with over $36,000. These student donations often lead to annual pledges or contributions from family members. What most students don’t know is that their pledges are helping researchers make concrete, tangible strides in the search for a cure.

In 2012, the FDA approved a breakthrough drug called Kalydeco, the first treatment to target the root cause of the disease rather than its symptoms. The drug has been a game-changer for the four percent of CF patients with hopes of extending their lives by decades. Researchers are now in late stage clinical trials for a similar drug for the 90 percent of the CF population who shares the most common genetic mutation. Unfortunately for Emily, she resides in the 6 percent of the population that won’t benefit from either.

That is why Emily’s Entourage has developed Emily’s cell-line and is working directly with labs to fund research for everyone in the outlying 6 percent, including Emily. Each dollar raised for Emily’s Entourage leads buys more research and research is the only hope for saving the lives of the 6 percent.