Value proposition

Fast Breakthroughs for Cystic Fibrosis

Emily's Entourage (EE) is an innovative 501(c)3 foundation that funds research for new treatments and a cure for individuals in the final 10% of the cystic fibrosis (CF) community that do not benefit from existing mutation-targeted therapies, including those with nonsense mutations. CF is a fatal genetic disease primarily affecting the lungs and digestive system. Founded by Emily Kramer-Golinkoff, a woman with advanced stage CF, and her devoted friends and family, the organization has been featured in national media, including the New York Times, STAT, CNN, People, and more.

Since 2011, Emily’s Entourage has awarded millions of dollars in research grants, launched a now-acquired CF gene therapy company, developed a patient registry and clinical trial matchmaking program to accelerate clinical trial recruitment, and led worldwide efforts to drive high-impact research and drug development. The organization’s work is particularly critical now as revolutionary breakthroughs are available for roughly 90% of the CF population, but those in the outlying 10% that unfortunately do not benefit from these major advances. The work of EE is laser-focused on changing that — and doing it fast, so nobody is left behind

Cystic Fibrosis, Fundraising, Personalized Medicine, Healthcare Improvement, Innovative Drug Therapy, Grant Funding, Clinical Trials, Publications, and Lobbying