Cambrey Vasconez White - rare mutations

Cambrey Vasconez White - rare mutations

Cambrey Vasconez White is the mother of toddler Rowland, who has Cystic Fibrosis. If you listened to our podcast with Vicky Maldonado, they have similar struggles. Cambrey is also working to find an equitable approach to rare mutations in the U.S. and Canada. These two women connected, as you’ll hear, because their sons share the same mutation.

Rowland received access to a CF modulator after a battle with her insurance company. Her son’s mutation is not on the FDA approved list for Trikafta…. even though there is proof that Trikafta will work on her son's mutation.

To follow Cambrey go to @cfadvocacy

You can email her: cambreywhite@gmail.com

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Episoder(207)

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

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

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

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 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

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

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.

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

Failure, Grit, and Breakthroughs with Dr. Tom Kaiser

Failure, Grit, and Breakthroughs with Dr. Tom Kaiser

“Behind every breakthrough are countless failures no one ever sees—but that’s exactly what makes progress possible.” Dr. Thomas Kaiser. When I have scientists on the podcast: they’re some of the coole...

1 Jun 42min

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