Columns

December 12, 2019January 15, 2020

I’m Sharing My Friend’s Story with Hope of a Triple-organ Transplant

Columns, Las Cosas de la Vida - a Column by Luisa Palazola

In this column, I want to share the story of a friend who needs a triple-organ transplant: lungs, liver, and kidneys. Before I delve into his experience, I’d like ... Read more

December 10, 2019December 6, 2019

Confessions from the 10 Percent: Life Without Trikafta

Columns, Life in the Grey: a Column by Bailey Anne Vincent

I am one of the 10 percent. The 10 percent cannot take the new, groundbreaking medication that will hopefully help cystic fibrosis (CF) patients for years to come. Some ... Read more

December 9, 2019December 5, 2019

We Must Build a Diverse Coalition Within the CF Community

Columns, Mutations & Conversations - a Column by Tré LaRosa

I learned long ago not to expect everyone to agree with me. I also realized that disagreement isn’t inherently wrong. From a young age, I was told that I ... Read more

December 3, 2019November 27, 2019

Casting Call: Sickly Leading Ladies Wanted

Columns, Life in the Grey: a Column by Bailey Anne Vincent

I miss someone. I don’t even know her … and yet I miss her. I miss the person I do not see on TV, in the movies, or portrayed ... Read more

December 3, 2019November 26, 2019

I Am Proud to Be Youthful

Columns, Victorious - a Column by Brad Dell

Loureen and I waited for our travel buddies to pass through airport security. Soon, we would be on a plane to Jordan, where we would provide various forms of ... Read more

November 26, 2019November 21, 2019

Temper Tantrums Aren’t on My To-do List

Columns, Life in the Grey: a Column by Bailey Anne Vincent

Today I had a meltdown. I don’t like to think of myself as someone who has “meltdowns,” but lately they are happening more and more. It started logically; I ... Read more

November 26, 2019November 27, 2019

Fear of Abandonment Has Driven My Life into the Ground

Columns, Victorious - a Column by Brad Dell

Six months ago, if I had been tied to a very uncomfortable chair and tortured for weeks while interrogators screamed, “What is your greatest fear?” the only things I ... Read more

November 20, 2019November 19, 2019

Attending This Year’s North American Cystic Fibrosis Conference Gave Me Hope

Columns, This Lung Life - a Column by Ella Balasa

Two weeks ago, I watched a livestream of the North American Cystic Fibrosis Conference (NACFC) as I popped Trikafta (elexacaftor/tezacaftor/ivacaftor) tablets out of their blister pack. Francis Collins, one of ... Read more

November 19, 2019November 14, 2019

A Rare Disease Film Festival Made Me Ponder Our Future Fight for Others

Columns, Victorious - a Column by Brad Dell

I don’t write much about my work at BioNews Services, which publishes Cystic Fibrosis News Today. I guess doing so seems a bit awkward since I’m a senior director at ... Read more

November 18, 2019November 14, 2019

Starting Trikafta with Hope for the CF Community

Columns, Mutations & Conversations - a Column by Tré LaRosa

I’m writing this column on the day I start treatment with Trikafta (elexacaftor/tezacaftor/ivacaftor), a new cystic fibrosis (CF) medication that I believe will be regarded as an inflection point ... Read more