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

Cystic 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 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.

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Jaksot(22)

Cystic Fibrosis Podcast 250 - Being A CF Mom

Cystic Fibrosis Podcast 250 - Being A CF Mom

In Jerry’s latest podcast, we meet Beth Gerritsen – mother to Charlie, who has cystic fibrosis, and Willie, who does not. From raising her boys in the Virgin Islands to moving back to the states, she ...

15 Kesä 20216min

Cystic Fibrosis Podcast 249 - CF Siblings Supporting Each Other

Cystic Fibrosis Podcast 249 - CF Siblings Supporting Each Other

In his latest podcast, Jerry chatted with Charlie, 11 with CF, and his older brother Willie about the CF-sibling relationship. They talk about spending almost all of their time together, playing sport...

8 Kesä 20217min

Cystic Fibrosis Podcast 248 - The Salty Scholar

Cystic Fibrosis Podcast 248 - The Salty Scholar

In the latest CF Podcast, we meet Griffin Taylor, a 15-year-old who loves lacrosse and squash, is on his school’s robotics team, and is his class’s treasurer. During quarantine, Griffin started The Sa...

12 Touko 20216min

Cystic Fibrosis Podcast 247 - Patient and Family Education – ZephyRx

Cystic Fibrosis Podcast 247 - Patient and Family Education – ZephyRx

In the latest CF Podcast, Jerry speaks with Dwight Cheu, CEO of ZephyRx, a home-based respiratory diagnostic testing and therapy that allows patients to actively manage and improve their own lung heal...

16 Maalis 20217min

Cystic Fibrosis Podcast 246 - Dealing with Post-transplant PTLD

Cystic Fibrosis Podcast 246 - Dealing with Post-transplant PTLD

The You Cannot Fail Rare Disease podcast series was created so that the Boomer Esiason Foundation can shine a spotlight on other people and organizations in the rare disease community. In the second...

9 Maalis 20218min

Cystic Fibrosis Podcast 245 - Advocating For Your Rare Disease

Cystic Fibrosis Podcast 245 - Advocating For Your Rare Disease

The You Cannot Fail Rare Disease podcast series was created so that the Boomer Esiason Foundation can shine a spotlight on other people and organizations in the rare disease community. In the first e...

24 Helmi 20218min

Cystic Fibrosis Podcast 244 - Accepting Cystic Fibrosis

Cystic Fibrosis Podcast 244 - Accepting Cystic Fibrosis

“I believe in enjoying life and living it to the fullest, having fun, and just enjoying time.” Brayden Walsh, a 16-year-old living with CF, joins Jerry Cahill’s CF Podcast to share his experience as ...

24 Helmi 20216min

Cystic Fibrosis Podcast 243 - Importance Of Exercise And Nutrition

Cystic Fibrosis Podcast 243 - Importance Of Exercise And Nutrition

In the latest CF Podcast, Anthony Esposito, aka Espo 2, shares why he loves fitness and nutrition. While he doesn’t have CF himself, he wants to inspire all people to improve their health with his You...

28 Tammi 20214min

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