Mutations & Conversations – a Column by Tré LaRosa

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 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 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

October 22, 2018October 19, 2018

Compliance Is One of Our Toughest Mental and Physical Battles

Columns, Mutations & Conversations - a Column by Tré LaRosa

As much as we resist the idea, cystic fibrosis can become a defining part of identity; a lifestyle that we’re forced without choice to live day in and day ... Read more

October 15, 2018January 23, 2019

Let’s Talk About What a CF Cure Really Means

Columns, Mutations & Conversations - a Column by Tré LaRosa

If you read my column last week, you know I care a lot about the interpretation of words. The word “cure” holds tremendous gravity in the cystic fibrosis community ... Read more

October 8, 2018October 8, 2018

Please Don’t Label Me as Sick

Columns, Mutations & Conversations - a Column by Tré LaRosa

Speaking as a writer: Words wield heavy power. Our written and spoken words are capable of mightiness. They can impart life-changing wisdom or inflict pain, whether intentionally or unintentionally. ... Read more

October 1, 2018October 1, 2018

Is It Our Responsibility to Educate Others About CF?

Columns, Mutations & Conversations - a Column by Tré LaRosa

I’ve noticed that there are two schools of thought in the CF community about discussing our life with a chronic disease. The first: If we expect others to be ... Read more

September 24, 2018September 24, 2018

What Does It Mean to Be ‘Normal’?

Columns, Mutations & Conversations - a Column by Tré LaRosa

A strange reality of living with cystic fibrosis (CF) is that we’re usually the only person with the disease we actively, directly engage with, aside from maybe siblings. The many ... Read more

September 10, 2018September 10, 2018

Grieving in an ‘Always Online’ World

Columns, Mutations & Conversations - a Column by Tré LaRosa

“So right now we live on borrowed time, I don’t know how long or what is to come in the next few months.” My sister Alyssa posted this sentence ... Read more

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