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Cambrey Vasconez White - rare mutations
Manage episode 421703363 series 2902409
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
Please like, subscribe, and comment on our shows, wherever you get your podcasts.
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com
Thanks to our sponsors:
Vertex: https://www.vrtx.com
Viatris: https://www.viatris.com/en
132 episode
Manage episode 421703363 series 2902409
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
Please like, subscribe, and comment on our shows, wherever you get your podcasts.
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com
Thanks to our sponsors:
Vertex: https://www.vrtx.com
Viatris: https://www.viatris.com/en
132 episode
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