Living With Cystic Fibrosis8 Mai 2020

CF Foundations: from California to Michigan working together

I 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 Callanan;44 years old; and Jerry Cahill, 63 years old) along with two CF Moms (myself and Siri) and Lee Becker, Boomer Esiasons' best friend, CF advocate and partner in the Boomer Esiason Foundation. He is the glue and reality check of our group.

Siri comes to us from California, Lee and Jerry from their respective homes in NYC, Brian from Florida, Emily and Laura from Detroit. The one person who couldn't be on this podcast is the "smartest one among us" said Callanan -- Emily Kramer Golinkoff founder of Emily's Entourage.

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Episoder(208)

The Anomaly: living off donated organs and dark humor by Inka Nisinbaum

What would you do if you didn't know what your future held? For people living with cystic fibrosis, uncertainty is often a constant companion. Inka Nisinbaum faced one of the biggest unknowns of her l...

27 Jul 47min

Ireland's Rising Golf Star, David Howard, who happens to have CF

Luck of the Irish. Irish international amateur golfer David Howard doesn't seem to need luck with all the talent he has. We had an inspiring conversation about chasing big dreams while living with ...

20 Jul 44min

CF Scholars: Stories of Determination

Dreams and Determination: Meet four Inspiring students, Living with cystic fibrosis. One of the greatest joys of The Bonnell Foundation is helping young adults living with cystic fibrosis pursue their...

13 Jul 53min

Turning family loss into hope: Kate O'Donnell's story

I thoroughly enjoy doing my podcasts. It’s the one thing I truly miss from my television news reporting days — interviewing extraordinary people every single day. Through The Bonnell Foundation, I now...

6 Jul 44min

Jon Gay on Radio, Podcasting, and the Art of Storytelling

Jon Gay and I had a great time recording this podcast because we not only talked about podcasting, but also reflected on our years in the broadcast business and what people should know before starting...

29 Jun 48min

Running changed and saved her life - Katie O'Grady inspires

"Many people have their own thing that lights them on fire, for me, it's running" say Katie O'Grady. CF modulator drugs changes are a game changer for people living with cystic fibrosis. Katie O’Grad...

22 Jun 38min

Final Breath, First New Life: Jillian’s Transplant Journey

“Take in your final breath before your first new one.” Those were the words Jillian heard before her double lung transplant—words that would mark the end of one life chapter and the beginning of anot...

15 Jun 26min

Rare, But Not Invisible: Chrisy and Dr. Kingzett talk advocacy.

Chrisy and Dr. Kingzett, two women I met when we were all trying to raise our rare voices a little louder. Christine “Chrisy” Klavitter and Dr. Kristen Kingzett are both rare disease advocates, but mo...

8 Jun 58min