Shows
Our Fight to Breathe: A Cystic Fibrosis PodcastAdvocacy in ActionIn this powerful episode of Our Fight to Breathe, host Caleigh Haber sits down with Emily Kramer-Golinkoff, founder of Emily's Entourage and a nationally recognized advocate for cystic fibrosis research. Diagnosed with CF at six weeks old, Emily has transformed her personal journey into a global movement, building a groundbreaking nonprofit that accelerates research and drug development for people with rare nonsense mutations of cystic fibrosis.This conversation explores the heart of advocacy - not just as awareness-raising, but as a lifeline for those navigating chronic illness. Emily shares insights on turning desperation into hope, the...2025-06-2347 min
Our Fight to Breathe: A Cystic Fibrosis PodcastIntroducing a Cystic Fibrosis PodcastWelcome to Our Fight to Breathe, a podcast amplifying voices from the chronic illness and rare disease community. Hosted by Caleigh Haber, who lives with cystic fibrosis and has undergone two double lung transplants, this show explores the realities of life with serious health conditions—the triumphs, grief, medical complexities, and human stories behind them.Featuring patients, caregivers, healthcare professionals, and advocates, each episode goes beyond survival to examine what it means to truly live while fighting for every breath. Whether you're navigating chronic illness yourself or supporting someone who is, this podcast offers authentic conversations de...2025-06-1201 min
CForYourself: A podcast from Cystic Fibrosis TrustCForYourself: Clinical Trials Day and CF researchTo mark Clinical Trials Day (20 May), we’re excited to be teaming up with US-based non-profit Emily’s Entourage on this episode of CForYourself.Started by Emily Kramer-Golinkoff in her parent’s living room, Emily’s Entourage (EE) aims to speed-up lifesaving research and drug development for people with cystic fibrosis (CF) who do not benefit from current modulators.“At Emily’s Entourage, we believe that every single person with CF deserves a lifesaving breakthrough, no matter how rare their mutation,” says Emily.Our host Lucy enjoys a (virtual) tea and catch-up with Emily, who cha...2025-05-2045 min
Secrets To Abundant LivingPursuing CF Breakthroughs for The Final 10% w/ Emily Kramer-GolinkoffIn 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...2024-09-1749 min
Living With Cystic FibrosisThe Final 10 percentApproximately 10 percent of the CF population is waiting for a CF modulator drug that will help them by correcting the underlying condition of their disease. Current modulator drugs help more common CF mutations. Emily Kramer Golinkoff is one of the people who doesn't have a CF modulator that will help her. Her Foundation, Emily's Entourage, is a leader in research. They are focusing on people with CF who have the nonsense mutation.On Emily's team is Dr. Chandra Ghose, who is the Chief Scientific Officer. Dr. Ghose founded Bioharmony Therapeutics, an early stage biotech startup that specialized in...2024-05-1338 min
Philadelphia Community PodcastWhat's Going On: Vote Early Day, Emily's EntourageBefore we get started - a quick update on my training for the AACR Philadelphia Marathon Weekend where I'll be running the 8k. A little set back - I have a cold and I feel crappy so that ruled out running for the past few days but I'm taking my vitamin c, getting rest and will be back training for the event November 19-20th to benefit the American Association for Cancer Research. Join me or donate by going to www.aacr.org/runnersforresearch.I get to meet some very impressive people in my work and this week...2022-10-2128 min
The best problem I ever hadUsing her voice to fight for her community—and herself Celebrating her 37th birthday, Emily Kramer-Golinkoff is defying the odds—and dedicating her life to advocating for herself and others. Diagnosed with a rare mutation of cystic fibrosis that has remained unimpacted by medical advancements, Emily founded Emily’s Entourage to give her community a voice and hope. Tune in to hear Emily’s remarkable journey and how she’s committed to leaving no stone unturned. “The world needs an agent of change and maybe that agent of change can be you.” 2022-01-1945 min
Cystic Fibrosis PodcastCystic Fibrosis Podcast 236 - Leaving No One Behind - Reaching The Remaining 10%“Everyone deserves that same realistic hope for a deep breath and for a future. And the work of Emily’s Entourage is focused on achieving that for every single person so no one with CF is left behind.”
Jerry sat down – virtually – with Emily Kramer Golinkoff in his latest podcast to discuss the incredible work that she does with her 501(c)3, Emily’s Entourage. As a patient advocate and speaker, the 35-year-old works to bring awareness to the 10% of the CF population who live with nonsense mutations and don’t have highly effective therapies. Because she is a part of that populatio...2021-01-2809 min
Living With Cystic FibrosisCF Foundations: from California to Michigan working togetherI am so proud to bring you our CF partners from around the Country, (Siri Vaeth, CFRI, Inc., Lee Becker and Jerry Cahill, Boomer Esiason Foundation, Brian Callanan, CFLF and Emily Schaller, Rock CF Foundation) we do our individual work with our respective CF Foundations and come together as part of the CF Engagement Network (CFEN). CFEN focuses on issues that impact our entire CF communities. Our thanks to Ryan Gough for getting us together.We had candid conversations in this podcast. It is from the perspective of three people with CF (Emily Schaller; 38 years old, Brian C...2020-05-0846 min
Just Talking PodcastEpisode 239 - With Emily Kramer-GolinkoffThis week I'm joined by Emily Kramer-Golinkoff, founder of Emily's Entourage. While we discuss her cystic fibrosis diagnosis, I learn what living with that disease is truly like. We also cover the origins of Emily's Entourage, and the fundraising impact the Entourage has made in very little time. There's also some talk about Medicine X and Emily's plans for Cystic Fibrosis Awareness Month. Enjoy!
You can follow Emily on Twitter @emilykg1, Emily's Entourage at @EmsEntourage4CF and learn more about Emily's Entourage at emilysentourage.org.
Run Time - 40:24
Send your feedback to feedback...2014-05-1440 min