In this episode, Amy Sylvis is joined by her dear friend Emily Kramer-Golinkoff, a remarkable advocate living with advanced cystic fibrosis (CF). Emily shares her journey, revealing how her experience with a fatal lung disease has paradoxically fostered an abundance mindset – driving her to focus on what truly matters. As the founder of Emily’s Entourage, a nonprofit dedicated to accelerating research for those with rare CF mutations who do not benefit from current treatments, Emily discusses the importance of health, purpose, and resilience. She also touches on the stark realities faced by the final 10% of the CF community and emphasizes the need for equity in healthcare. Despite the challenges, Emily's story is one of profound clarity, gratitude, and a relentless pursuit of a better future for all those affected by CF.
Emily Kramer-Golinkoff is Co-Founder of Emily's Entourage, an innovative 501(c)3 that accelerates research for individuals in the final 10% of the cystic fibrosis (CF) population that do not benefit from existing mutation-targeted therapies. She is also an internationally recognized patient advocate and speaker.
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 media outlets, including New York Times, STAT, CNN, Yahoo, AOL, People, The Philadelphia Inquirer and more.
Emily has a master’s degree in bioethics and certification in clinical ethics mediation from the University of Pennsylvania, where she also completed her undergraduate degree. She has given talks at The White House, TEDx, University of Pennsylvania's Annenberg School for Communication Commencement, Stanford University's Medicine X Conference, and more. Emily was named a “Champion of Change” for President Obama’s Precision Medicine Initiative and is the recipient of the 2024 Personalized Medicine Coalition's Award in Leadership in Personalized Medicine, 2020 Philadelphia Magazine Luminary Award, and the 2016 Global Genes Rare Champion of Hope for Advocacy Award.
https://www.emilysentourage.org
https://www.instagram.com/emilysentourage
https://www.facebook.com/EmilysEntourage
https://www.twitter.com/EmilysEntourage
https://www.linkedin.com/company/emilysentourage
https://www.youtube.com/@EmilysEntourage
https://www.linkedin.com/in/amysylvis
https://www.sylviscapital.com
https://www.sylviscapital.com/webinar
01:44 About Emily and her nonprofit, Emily's Entourage
06:54 Why Trikafta doesn't help The Final 10%
11:04 Equality problem in healthcare
13:58 The positive sides of CF
28:28 Emily's advice for more abundance
33:35 More on Emily's Entourage
38:28 Truth about drug development