Emily’s Entourage Co-founder Awarded 2024 Leadership in Personalized Medicine Award by the Personalized Medicine Coalition

Emily Kramer-Golinkoff, an individual with cystic fibrosis and co-founder of Emily’s Entourage, is the winner of this year’s Award for Leadership in Personalized Medicine presented by the Personalized Medicine Coalition.

Emily Kramer-Golinkoff, co-founder of Emily’s Entourage and 2024 Leadership in Personalized Medicine Award recipient

Lower Merion, PA – June 12 2024 — Emily Kramer-Golinkoff, co-founder of Emily’s Entourage (EE), an innovative 501(c)3 that accelerates research for new treatments and a cure for the final 10% of people with cystic fibrosis (CF) who do not benefit from existing CFTR modulators, today has been announced as the recipient of the 2024 Award for Leadership in Personalized Medicine by the Personalized Medicine Coalition (PMC).

Diagnosed with CF as an infant, Kramer-Golinkoff faces a relentless battle against this progressive and fatal genetic disease, which causes severe damage to the lungs, digestive system, and other organs. While available drugs can improve how the CFTR protein functions in 90 percent of individuals with CF, Kramer-Golinkoff and thousands of others with the rarest forms of this disease continue to confront immense challenges daily.

Despite a rigorous regimen that includes breathing treatments, injections for cystic fibrosis-related diabetes, and taking 30 pills a day, Kramer-Golinkoff has been a driving force in pioneering new futures for people with CF who, like her, do not benefit from any of the existing disease modulating treatments.

After earning bachelor’s and master’s degrees in communications and bioethics from the University of Pennsylvania, Kramer-Golinkoff co-founded Emily’s Entourage in 2011 to fast-track high-impact breakthroughs for the CF community. Since then, EE has awarded more than $9.8 million in funding for research and drug development programs aimed at finding life-saving treatments and cures for the last 10 percent of individuals with CF. Additionally, EE has secured $52.3 million in follow-on funding, launched a now-acquired gene therapy company, and developed a direct-to-patient clinical trial matchmaking program to expedite recruitment and increase access to targeted therapies.

“Personalized medicine is my hope, and it is the hope of every single person like me with a rare disease or a rare mutation or a medical condition that simply requires a more customized treatment,” Kramer-Golinkoff says of the cause.

The award will be presented during the 18th Annual Personalized Medicine Conference on November 13, 2024, in Boston, Massachusetts. Learn more about the award and event at PMC’s Conference website here.

About Emily’s Entourage

Emily’s Entourage is an innovative 501(c)3 that accelerates research for new treatments and a cure for individuals in the final 10% of the cystic fibrosis (CF) population that do not benefit from currently available mutation-targeted therapies. 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 has been featured in national media, including the New York Times, STAT, CNN, People, and more. Learn more at emilysentourage.org.

Media Contact

Hannah Kleckner

Director of Marketing and Communications

hannah@emilysentourage.org