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Grace in a Time of Change

Treatments for cystic fibrosis have come a long long way in my 35 years. It’s kind of mindblowing to think about all the advancements I’ve seen. When I was diagnosed with CF at two weeks old, the doctor told my parents that the life expectancy wasn’t great, but to stay hopeful because a lot of research and progress was being made. I don’t think that doctor knew just how right she was!

The Spirit of Elvis and Cystic Fibrosis

It was a new place and the end of a long road trip. The final stop of the trip that I had, only days ago, and hundreds of miles away, met both a Cystic Fibrosis Warrior and the family of a fallen Cystic Fibrosis Warrior. Indeed, the family of a Cystic Fibrosis Angel

Join Us Virtually for Champ's Challenge 2020!

In the wake of an early Sunday morning, the anticipation of Champ's Challenge has settled in for the past four years (for me, personally). Knowing that we are gathering together has been comforting. Working hard as a team to fundraise for a humble cause, our community of supporters has made this possible every year. Gratitude runs deep when we work collectively.

STROLO Star: Lara Govendo

“The emphasis on awareness as a means of sharing only CF factoids inhibits others from
connecting with us as fellow human beings. Bridging the gap between education and the human connection begins with nourishing desires to develop understanding. The goal of awareness is to draw closer to each other. The knowledge of how our bodies operate fulfills only a slice of our need to be seen in our entirety.

The Pinwheel of an Angel

And the pinwheel was spinning. 

It was my first glimpse of Cloey Shelor, our Cystic Fibrosis Angel, whom I had met some seven years ago on Facebook. Such a vibrant young lady, I could already tell. She seemed to be a Cystic Fibrosis Warrior and celebrity from the very start, prior to even reaching the status of her teenage years. Her energy, her stamina, her talent. All were worthy of amazement.

Carving Mountains

“Eventually, all things merge into one, and a river runs through it.” – Norman McLean

We planned on a modest hike, roughly 900 feet in elevation to the top of a ridge where we were promised a scenic waterfall. Except, by this time of year, there’s no guarantee the waterfall will be roaring.

The sticky heat caused beads of sweat to run down my chest and back, as I puffed on my albuterol. I blocked the pain in my muscles as I forced myself to slow my breathing, regulating my heart rate while I checked my bag for salt tabs.

Memorial Day Birthday

Here I am living with CF and writing this blog as I am about to turn 74 years old. I was born on Memorial Day - May 30th. For many years of my life, I celebrated my birthday with the day off from school or work, often with a family picnic. Now Memorial Day is on the fourth Monday of May and I usually have to wait a few days to celebrate the birthday.

STROLO Star: Bree Labiak

“I've learned life is a lot like surfing. When you get caught in the impact zone, you need to get right back up, because you never know what's over the next wave... and if you have faith, anything is possible, anything at all.” - Bethany Hamilton

Keys to a CF Life

How do you know that you’ve stayed too long for lunch? When the waitress presents you with the same, identical tab, twice.

The conversation, which had been fostered from various years of Facebook followings and interactions between me and Cystic Fibrosis Warrior Stephanie Santana, led to that overstay at an eatery near her town in the Florida Keys. I had admired Stephanie over time for her personality, her talent, her tenacity, and her zest for being unique. 

Easy Spring Pasta

There are two kinds of people, those who love pasta, and those who are wrong. Okay, okay, I know not everyone loves pasta, and that’s okay, I just don’t understand it!

This pasta dish has been a favorite of ours for the past couple of years, we enjoy it best outside on the patio when the weather is just right.

Feel free to customize this dish to make it your own and fit your tastes!


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