Emily's Entourage

Emily’s Entourage is a 501(c)3 organization that fast-tracks research for new treatments and a cure for rare nonsense mutations of Cystic Fibrosis, a fatal illness afflicting Emily and many others. Named a White House Champion of Change for Precision Medicine, Emily’s Entourage has raised over $3 million since 2011 and led worldwide efforts to to drive high-impact research and groundbreaking collaboration. The organization was founded by Emily Kramer-Golinkoff, a 32-year-old with advanced stage Cystic Fibrosis, and her devoted friends and family. The urgency of Emily’s condition is spurring revolutionary research and drug development that could help not only those with Cystic Fibrosis (CF), but people who suffer from a wide variety of genetic diseases caused by nonsense mutations, including forms of muscular dystrophy and cancer. Nonsense mutations, while rare among those with CF, are the cause of approximately 12% of all genetic diseases, affecting 30 million people around the world. Made up of thousands of supporters, followers, and volunteers from around the globe, Emily’s Entourage has emerged as a worldwide movement, bound by a steadfast tenacity, commitment and shared belief that Emily and everyone like her deserve hope for a future. Emily is an internationally-recognized patient advocate and speaker and has given talks at The White House, TEDx, University of Pennsylvania Annenberg School for Communication Graduation, Global Genes Rare Disease Summit, Stanford University’s Medicine X conference, and many other events. Emily’s Entourage has been featured on CNN.com, People.com, Time.com, AOL.com, Yahoo Health and many other national and local media outlets. View our 2018 Campaign Video here>>> https://www.youtube.com/watch?v=V0ia3Cgy8vM