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 episode, Swapna Kakani shares her story about being born with a rare disease, short bowel syndrome and later developing rare PTLD (Post-transplant lymphoproliferative disorder). Because of her experiences, she founded Alabama Rare, a grassroots coalition to unite the state around the rare disease population. The coalition acts to bring support to individuals and families, and advocate for necessary change. Tune in to learn more about the rare disease community! This video podcast series was made possible through an unrestricted educational grant from Atara Bio to the Boomer Esiason Foundation.

Episoder(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 Jun 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 Jun 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 Mai 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 Mar 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 Mar 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 Feb 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 Jan 20214min

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