Bala Cynwyd woman to be honored at White House

BALA CYNWYD Emily Kramer-Golinkoff of Bala Cynwyd is one of nine "Champions of Change" to be honored at the White House on Wednesday for making a difference in health treatment.

Kramer-Golinkoff is a 30-year-old with advanced stage cystic fibrosis who cofounded Emily's Entourage to raise funds and awareness for new treatments and a cure for the rare form of her disease.

The nine people to be honored Wednesday "embody the promise of the President's Precision Medicine Initiative, which was launched earlier this year to encourage patients, researchers, and providers to work together to develop individualized treatments," according to a statement from the White House.

The program is to feature remarks by Secretary of Health and Human Services Sylvia Mathews Burwell; a senior adviser to the president, Brian Deese; and the director of the National Institutes of Health, Francis Collins.

To watch the event live, go to www.whitehouse.gov/live on Wednesday at 2 p.m.

Kramer-Golinkoff is manager of strategic initiatives and operations at the Penn Medicine Social Media and Health Innovation Lab. Since its founding in 2011, Emily's Entourage has raised more than $1.5 million and led worldwide efforts to fast track research on rare "nonsense" CF mutations.

With only 35 percent of her lung function, Kramer-Golinkoff spends three to four hours a day on treatments, injects multiple insulin shots, and takes pills to slow the progression of her disease.

"I am thrilled and so deeply honored to be named a White House Champion of Change and amongst such an inspiring group of fellow honorees," Kramer-Golinkoff said. "This is such an exciting initiative and one that gives me a lot of hope." - Kathy Boccella