Bala Cynwyd resident Emily Kramer-Golinkoff was honored at the White House on July 8 along with eight others who were designated as 'Champions of Change'.
In an event broadcast live via Whitehouse.gov, the nine 'Champions' were recognized for their efforts in making a difference in health treatment. In Kramer-Golinkoff’s case it was her part in cofounding Emily’s Entourage, an organization that assists in the funding and promotion of new treatments and pathways to a cure for a rare form of cystic fibrosis. The 30-year-old is herself dealing with advanced stage form of the disease.
For three to four hours a day, Kramer-Golinkoff fights her condition with treatments, pills, and multiple insulin shots. However, despite only having 35% lung function, she works for the Penn Medicine Social Media and Health Innovations Lab as manager of strategic initiatives and operations, in addition to her work with Emily’s Entourage.
The organization has raised in excess of $1.5 million since its founding in 2011. It has also, most likely with the help of a brochure printing service, spearheaded a worldwide effort to advance research into rare 'nonsense' cystic fibrosis mutations.
Regarding the 'Champions of Change', the White House released the following statement:
"(They) 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".
