July 06, 2015
Source/www.emilysentourage.org
Emily Kramer-Golinkoff will be honored by the White House on Wednesday for her work to improve treatment for those who suffer from Cystic Fibrosis.
A Montgomery County woman will be recognized Wednesday by the White House for helping to improve health and treatment of disease.
Emily Kramer-Golinkoff, 30, of Bala Cynwyd, is co-founder of Emily's Entourage and manager of strategic initiatives and operations at the Penn Medicine Social Media and Health Innovation Lab. Her nonprofit organization raises funds and awareness to speed new treatments and a cure for rare mutations of Cystic Fibrosis. With advanced state CF and disease-related diabetes, her lung capacity is only 35 percent, requiring several hours of treatments daily and multiple insulin shots.
In just four years, Kramer-Golinkoff's organization has raised more than $1.5 million to hasten research on rare (nonsense) mutations through grants and collaboration by leading scientists in the Philadelphia region.
In a statement, the White House said Kramer-Golinkoff and eight others will be honored as “Champions of Change” who "embody the promise of the President’s Precision Medicine Initiative, which was launched earlier this year to enable a new era of medicine through research and technology that empowers patients, researchers, and providers to work together toward development of individualized treatments."
According to her Emily's Entourage bio, Kramer-Golinkoff completed her master’s in bioethics and certification in clinical ethics mediation at the University of Pennsylvania in 2013. In 2007, she graduated cum laude from the University of Pennsylvania’s Annenberg School for Communication, where she received the Honorable Walter H. Annenberg Award.
A leader in the patient advocacy and health care social media community, she was named a Stanford Medicine X ePatient Scholar and Sage Bionetworks “Sage Scholar,” and has given talks at TEDx, ONC Consumer Health IT Summit, Tulane University, and Stanford University’s School of Medicine and Medicine X Conference. She serves as a consultant and committee member for various strategic initiatives at the Cystic Fibrosis Foundation on a volunteer basis, and on the board and as a member of other nonprofit and socially minded organizations.
She delivered the 2013 graduation address to undergraduate communication students at her alma mater, the Annenberg School.
The White House program will feature remarks by Sylvia Mathews Burwell, secretary of health and human services; Brian Deese, senior advisor to the president; and Francis Collins, director of National Institutes of Health.
The Champions of Change program was created as an opportunity for the White House to feature individuals doing extraordinary things to empower and inspire members of their communities.
Wednesday's event will be live streamed on the White House website at 2 p.m.
