Cystic Fibrosis Podcast 236 - Leaving No One Behind - Reaching The Remaining 10%

Cystic Fibrosis Podcast

“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 population, she has unique insight into what it is like to see major treatments pass her by as her disease moves into advanced stages. Emily’s biggest fear is time, but she continues to work tirelessly to fight for her health and to advocate for those who, like her, are in the “10 percent.” This video podcast was made possible through an unrestricted educational grant from Translate Bio to the Boomer Esiason Foundation.