Columns

November 26, 2018November 20, 2018

Thanking the Care Teams of Chronic Disease Patients

Columns, Mutations & Conversations - a Column by Tré LaRosa

As I’ve grown older, I’ve become a self-advocate, taking initiative when possible. I’ve developed a close relationship with my care team, which I believe is crucial for adults with ... Read more

November 21, 2018November 20, 2018

Giving Thanks for the Positive Things CF Has Brought

Columns, Modern CF Mama - a Column by Janeil Whitworth

It’s that time of year when we sit around our tables with carved turkeys, mashed potatoes, and a healthy dose of gratitude in honor of Thanksgiving. Sometimes I struggle ... Read more

November 20, 2018November 20, 2018

The Powerless Car and the Powerful Dad

Columns, Victorious - a Column by Brad Dell

I parked outside a library, where I’d planned to work for the day, at 7 a.m. in freezing 40-degree weather (I was raised in Hawaii). The library wouldn’t open ... Read more

November 19, 2018November 16, 2018

The Bittersweet Downside of CFTR Modulators

Columns, Mutations & Conversations - a Column by Tré LaRosa

I’ve been on Orkambi (lumacaftor/ivacaftor), a cystic fibrosis transmembrane conductance regulator (CFTR) modulator, for just over three years now. My lung function has remained stable during that time. CFTR ... Read more

November 14, 2018November 13, 2018

Rethinking Our Reactions to ‘Five Feet Apart’

Columns, Modern CF Mama - a Column by Janeil Whitworth

The trailer for “Five Feet Apart,” the spring 2019 film about two people with cystic fibrosis (CF) falling in love despite cross-infection guidelines, dropped on social media this month. ... Read more

November 13, 2018January 9, 2019

In Defense of ‘Five Feet Apart’ — Sort of

Columns, Victorious - a Column by Brad Dell

The cystic fibrosis community gets buzzing at the news of a successful Vertex trial or when a well-respected researcher even casually mentions the word “marijuana.” When a trailer for ... Read more

November 12, 2018November 8, 2018

Exciting Revelations from the NACFC 2018 Poster Sessions, Part 3

Columns, Mutations & Conversations - a Column by Tré LaRosa

Last in a series. Read part one and part two. The poster sessions at the North American Cystic Fibrosis Conference (NACFC) in Denver last month included many interesting branches of the ... Read more

November 6, 2018November 5, 2018

I’ve Allowed My Disease to Abuse My Energy

Columns, Victorious - a Column by Brad Dell

Well, it finally happened: Twenty-two months after my double-lung transplant, I finally got sick for the first time. I gotta say, with a suppressed immune system, illness isn’t so ... Read more

November 5, 2018November 8, 2018

Exciting Revelations from the NACFC 2018 Poster Sessions, Part 2

Columns, Mutations & Conversations - a Column by Tré LaRosa

Second in a series. Read part one. The poster sessions at the North American Cystic Fibrosis Conference (NACFC) in Denver last month included many interesting branches of the wonderful ... Read more

November 1, 2018November 8, 2018

Exciting Revelations from the NACFC 2018 Poster Sessions, Part 1

Columns, Mutations & Conversations - a Column by Tré LaRosa

First in a series. The poster sessions at the North American Cystic Fibrosis Conference (NACFC) in Denver this month included many interesting branches of the wonderful world of CF ... Read more

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