But, You Look Healthy Michael Healey

Where do we end? At a new beginning. We wrap up this series by learning about the physical sensations of taking Trikafta, and the new identity one must cope with at this new frontier of CF. We tie up loose ends. We reflect and try to begin. 

To donate to the Cystic Fibrosis Foundation, see link below:

https://www.cff.org/give-monthly/

Perspective of a parent, the cost of caregiving, the toll of transformation. Today we talk with Francine. We hear firsthand about the experience of raising a child with cf. We learn about all the impossible questions and challenges that come up in taking physical and emotional care of a family as well as a sick child. We hear yet another voice in a chorus praising the mind blowing transformation Trikafta has brought. 

Cystic Fibrosis Foundation, the power of fundraising, striving for a cure. Today we talk with Terry Waite. We learn about the history of the Cystic Fibrosis Foundation and their fundraising goals and methodology. We begin to understand the herculean effort it has taken to produce gene modulators like Kalydeco and Trikafta, and set our sights forward on treatments for all patients with cf. The CFF dreams big, and hopes to find a cure, not just bandaids.

To connect with the Cystic Fibrosis Foundation, or donate, visit links below:

https://www.cff.org/

https://www.cff.org/give-monthly/

Pulmonologist, treating the whole person, profound trust. Today we talk with Dr. Uluer. We hear from the medical side of how to think about cf. We learn about the complications of treating an invisible illness and the heartache of growing close to patients with chronic disease. 

Rare mutation, accessibility battles, and why we still fight. Today we talk with Ela. We learn about the 10 percent of CF patients who have rare mutations and cannot take gene modulators like Kalydeco or Trikafta. Our understanding of advocacy and accessibility gets revisited, and we connect with the clear reason why this fight is not done, and why fundraising must continue until CF stands for Cure Found.

To connect with Ela, visit the links below:

instagram: @ela_castillo

LinkdIn: www.linkedin.com/in/elacastillo/

The dark passenger, rebirth, and staying loud. Today we talk with Jacob. Our understanding of the complexities of CF gets expanded, while we hear a dramatic tale of Jacob's journey to Trikafta. We hear about how profound Trikafta has been for him, and why it is so important to race towards getting it to all eligible patients. 

To connect with Jacob or CF Get Loud Canada, visit the links below:

Instagram: @jajara1

Twitter: @jacobcfgetloud

CF Get Loud Canada

instagram and twitter: @cfgetloud

website: cfgetloud.ca

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