Penn alumna and employee fights valiantly against rare form of disease

Emily Kramer-Golinkoff is a warrior. She manages her own nonprofit, frequently travels across the country—and sometimes world—for speaking engagements, and works with Penn Medicine’s Social Media and Health Innovation Lab. That’s on top of at least three hours of medical treatment every day.

Emily's Entourage
Emily Kramer-Golinkoff manages her own nonprofit and works with Penn Medicine’s Social Media and Health Innovation Lab while battling an aggressive, rare form of cystic fibrosis. Photo by Emily Kramer-Golinkoff

Emily Kramer-Golinkoff is a warrior. She manages her own nonprofit, frequently travels across the country—and sometimes world—for speaking engagements, and works with Penn Medicine’s Social Media and Health Innovation Lab. That’s on top of at least three hours of medical treatment every day.

Kramer-Golinkoff has an aggressive, rare form of cystic fibrosis (CF), a genetic and progressive disease that affects the lungs and digestive system, as well as many other organ systems. She also has CF-related diabetes. Right now, she conquers each day with about 35 percent lung function.

Emily's Entourage
Emily Kramer-Golinkoff manages her own nonprofit and works with Penn Medicine’s Social Media and Health Innovation Lab while battling an aggressive, rare form of cystic fibrosis. Photo by Emily Kramer-Golinkoff

“And that’s when I’m healthy,” she says.

Because Kramer-Golinkoff has such a rare mutation of CF, recent advancements in the treatment of the disease, such as the creation of the drug Kalydeco, are mostly useless to her. Knowing that her illness brings with it a shortened life expectancy—41 years, on average—she decided to create an initiative to speed up research for life-saving therapies for everyone with CF.

Kramer-Golinkoff created Emily’s Entourage, a 501(c)(3), with family and friends in 2011 with a goal of finding a cure for the CF population with rare mutations. There are more than 1,800 known mutations of the disease.

Emily’s Entourage uses Kramer-Golinkoff’s personal story to encourage awareness, funding, and support from worldwide researchers in the biotechnology and pharmaceutical fields. Connectivity and urgency are both key.

“We’re trying to get people to think creatively by forcing collisions of different forms of thinking,” Kramer-Golinkoff says. “The current paradigms are too slow for people like me. We have to change something up for hope of the desired outcome. Bringing people together and centering it around a human story, that’s really the way to make people think differently and work faster.”

Emily’s Entourage started as a small-scale initiative hoping to raise a total of $50,000. A brief, homemade video telling Kramer-Golinkoff’s journey and some social media outreach helped the organization garner $40,000 in its first week. It’s soared since.

Emily’s Entourage has grown over the years by sponsoring scientific symposia—one with Penn Medicine’s Orphan Disease Center—as well as fundraising events such as marathons and charity bike rides, tennis tournaments, yoga and fitness classes, jewelry sales, and benefit concerts on college campuses. Its annual gala in December attracted 500 attendees who raised $220,000. To date, Emily’s Entourage has raised $2 million.

Kramer-Golinkoff’s work with Emily’s Entourage and as a patient advocate, speaking of her condition at events all over the world, hasn’t gone unnoticed. In July, the White House named her one of nine new “Champions of Change.”

Talking with Kramer-Golinkoff, who has a bachelor’s in communication and a master’s in bioethics from Penn, the severity of her illness is not easily seen, nor is the copious amount of energy she had to exude to make it to the meeting, or her knowledge that she might not have much longer to live. The 31-year-old is hopeful, working every day to beat the odds.

“With disease, as with so many things, I think it’s really natural to accept your fate,” Kramer-Golinkoff says. “I guess I’ve realized that you don’t have to.”

Originally published on .