Why This Main Line Nonprofit Is Getting Support from the White House
By Marni Prichard Manko| January 15, 2016 |
After being honored by the White House this summer, Emily Kramer-Golinkoff gets ready for her nonprofit's annual gala with a renewed sense of purpose.
By sharing the story of her struggle with cystic fibrosis, Emily Kramer-Golinkoff has raised millions of dollars to help find a cure for the disease.
Last summer, Emily Kramer-Golinkoff was vacationing in Italy with her family when she got a call. But it wasn’t any ordinary phone call. It was from the White House. And she missed it.
“I mean, I have to miss the one call you don’t want to miss?” laughs the 30-year-old founder of Emily’s Entourage, a local organization dedicated to raising awareness and funds for the genetic lung disease cystic fibrosis (CF), which she has had for most of her life. Kramer-Golinkoff eventually got in touch with the White House and learned that she had been named one of nine Champions of Change for Precision Medicine for the work she’s doing through Emily’s Entourage. “When the White House recognizes the work that your organization is doing, it’s the ultimate validation,” she says.
That she was honored by the president isn’t shocking to anyone who knows Kramer-Golinkoff: The Main Line native has been battling a rare mutation of CF—a disease which is rare in and of itself—since childhood. But despite only having 35 percent lung capacity and spending three to four hours a day on treatments that help her breathe, Emily has accomplished what many healthy people merely strive for. With a master’s degree in bioethics from the University of Pennsylvania, she now works at Penn’s Social Media and Health Innovation Lab and has speaking engagements on the subject of patient advocacy around the country. And while she finds that work to be life affirming, she hopes her efforts with Emily’s Entourage will be life saving.
Emily’s Entourage started four years ago with a simple homemade video about Kramer-Golinkoff’s plight. She and her family e-mailed the clip to friends and family in the hopes of raising $50,000 within one year; they raised it in a week. Today, the organization has brought in over $1.5 million, spearheaded well-respected scientific symposiums, and hosted annual galas where the newest video is debuted every year. This year’s event is set for December 5 at The Baldwin School in Bryn Mawr.
While the organization is committed to increasing awareness, its main purpose is to fast-track new treatments and find a cure for rare mutations of CF, like Kramer-Golinkoff’s. There are roughly 1,900 different forms of the disease, so very limited research funds are dedicated to unusual cases.
With the median life expectancy of someone with CF being just 41, Kramer-Golinkoff has literally no time to waste. “It’s a progressive disease, so we are working against a scary timeline. We’re trying to use my story to humanize the disease,” she says of her fundraising tactics. “People really respond to faces and stories and families in a way that’s different. There are so many important causes out there, but we can touch people’s hearts by making them feel like I could be anyone’s daughter or sister or best friend.”