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Cambrey Vasconez White - rare mutations

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Manage episode 421703363 series 2902409
Konten disediakan oleh The Bonnell Foundation and Laura Bonnell. Semua konten podcast termasuk episode, grafik, dan deskripsi podcast diunggah dan disediakan langsung oleh The Bonnell Foundation and Laura Bonnell atau mitra platform podcast mereka. Jika Anda yakin seseorang menggunakan karya berhak cipta Anda tanpa izin, Anda dapat mengikuti proses yang diuraikan di sini https://id.player.fm/legal.

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

  continue reading

132 episode

Artwork
iconBagikan
 
Manage episode 421703363 series 2902409
Konten disediakan oleh The Bonnell Foundation and Laura Bonnell. Semua konten podcast termasuk episode, grafik, dan deskripsi podcast diunggah dan disediakan langsung oleh The Bonnell Foundation and Laura Bonnell atau mitra platform podcast mereka. Jika Anda yakin seseorang menggunakan karya berhak cipta Anda tanpa izin, Anda dapat mengikuti proses yang diuraikan di sini https://id.player.fm/legal.

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

  continue reading

132 episode

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