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Cultivating Healthy Eating Habits in Our Children

Disclaimer: The following recommendations are not meant to be treated as medical advice. Contact your CF team’s dietician and work closely with medical professionals to implement a specific feeding intervention strategy for your family.

Why Your Donation Matters

I was 21 when I received my first grant from the CFLF, and it simply changed the outcome of my life. In my younger years I suffered from the mental hardships that cystic fibrosis patients are known to endure. I was lost and felt like I had no calling in life except to be sick. It was a terrible way to live. But one day I decided to take a chance and attend a yoga class, and EVERYTHING clicked.

Ventura Sunset - 2018

As the sun set on 2018, I reflected on what a good year it had been. I was in good health for the year with no hospitalizations. Here I am at seventy-two (72) years old and maintaining my active lifestyle: swimming laps, golfing, regular walking and yoga. It is not always easy to be compliant with daily treatments for CF but I am consistent and I am still here. I have had the benefit of Vertex, Kalydeco (Ivacaftor) for three years and what a difference it has made.

Lessons In CF Related Arthritis

We all know having CF is hard, for many different reasons. Physically, one of the most difficult aspects of having CF for me is joint pain.

It’s been more difficult than the two major back surgeries I had and even more intense the time I had to have the hole for me feeding tube reopened with no anesthetic, nothing to numb the area, and nothing for the pain. But that’s a story for another day, a rather interesting and wild one!

The Best Gift of All

It’s December 23rd, and I’m watching the Christmas lights twinkle on the tree.  We were going to get a real one until we remembered last year’s adventure, what with the tree nearly careening off the car into oncoming traffic four or fifteen times.  No, this year, we went with the old standby.  An artificial beauty that was efficiently pre-lit until the cat scaled the tree and gnawed every cord.  Still she stands, elegantly hoisting the dainty pre-kids ceramic ornaments just out of grabbing distance.  Her lower extremities hang low with hand-made treasures from our eight-year-old son and fiv

Knock Out CF- San Diego

I remember very clearly, to the day, when the Cystic Fibrosis Lifestyle Foundation saved my life.

I was visiting my family in Dallas, TX and they were out to get groceries while I stayed behind.

My wheelchair, was in the corner of the apartment. My medications littering the kitchen table, cupboards, and counters.

Faith in Humanity

In spite of everything, I still believe that people are really good at heart. – Anne Frank.

Everybody Fights

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Next week the CFLF will hold it’s fourth annual KnockOut CF - Boston event at George Foreman III’s gym, Everybody Fights (formerly named The Club).

Pitty-Pats and PowerPoints: Five Years of CF Parenting

The other day, my five-year-old daughter and I found ourselves doing the pitty-pats, of all things. She was in day one of a nasty respiratory infection and said that the pressure of the vest was hurting her. So I fished out the old pastel pink and blue percussors from her memory box and brought them down to the couch. For the next fifteen minutes, I gently tapped on my daughter’s coughing body as I told her stories of the pitty-pat days gone by. 

Stop Apologizing

Dear Self,
Stop apologizing for being sick. Stop apologizing for the coughs that you can’t control. Stop apologizing to waiters for the strict diet you follow so you can maintain as much health as possible. Stop apologizing for the missed appointments and canceled plans. You can’t control these things, and they don’t make you any less of a person.

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