CFLF Blog

The long road to Trikafta

The CFTR modulator program began in 2000. This was the biggest breakthrough for CF since the CF gene was discovered in 1989. There was excitement and real hope that researchers were finally able to understand the genetic disease and the underlying cause of it.

3,296 miles of inspiration. That was the journey.

You can not know someone through a relationship built from texts. Through messaging. From being friends on social media. You need to meet them. Hear their voice. Talk to them. This was my quest last week when I set out on a travel.

There were three fellow folks with Cystic Fibrosis who I wanted to meet. They are Warriors. I had known all three in one way or another for several years via Facebook. Facebook was not enough. I had to sit face to face with them over a lunch to hear their stories. And I did.

Reel Talk

It’s easy to fall victim to the comparison trap. We live in an age where digital interaction is more common than face to face. It’s an unfortunate truth that we hold the pretty, unadulterated parts of people’s lives that are portrayed on social media in such high esteem, completely negating the lack of human relatability factor or rather the necessity for it.

Smoothies!

Smoothies are one of my go-to foods for breakfast. They were also a way for me to get in extra calories when I was struggling to gain/maintain weight. Sometimes, drinking calories is a lot easier than eating them.

Balancing smoothies out with less fruit,  plus more protein and added fats will provide more long lasting energy than your typical smoothie made with lots of fruit and juice.

Interview with Lauren Luteran

Lauren Luteran

A few weeks ago CFLF Founder, Brian Callanan and I had the pleasure of interviewing Lauren Luteran who is a two time CFLF Grant Recipient. Lauren received Recreation Grants in 2014 and 2015 for dancing lessons when she was 14 and 15 years old. Lauren is now 19-years-old and was recently a contestant on the hit show, So You Think You Can Dance. If you haven’t had the opportunity to see her performance that wowed the judges, please stay tuned to the end of her interview to see the stunning performance yourself.

 

Lessons Outside the Classroom

From Kindergarten, we are taught all the basic subjects: math, science, reading, writing… These prepare us for our careers. Some for basic life skills. Cooking in Home Economics (is that still a class?!) Working out our bodies in physical education. How to balance a checkbook in Accounting (does anyone else do that anymore?) But where are we taught how to deal with the heavy matters of life? What class can we take on that?

Can Faith and Science Coexist?

Have you ever wondered if faith and science can coexist? I have. My six-year-old daughter lives with cystic fibrosis, and from the moment I learned of her diagnosis, I have believed whole-heartedly in the power of both faith and science to shape my daughter’s future and my own outlook on her life.

Every evening, I hold my daughter’s hand and pray with her as she lies in her bed. Our final verse is always the same. “Please watch over my baby. May she be healthy, happy, safe, and strong. I am so proud of her, and I am so glad that You gave her to me.”

Friends

As I write this blog my husband, Rich and I have just celebrated our 45th wedding anniversary! It is hard to believe a hippie wedding in 1974 could last this long.  It was an Indian summer day on October 5, 1974. The sun rays peeked through the forested slopes and cool canyons at Miwok Shelter in Huddart County Park in Woodside, CA.

Our special ‘Gift’ that transforms lives

The holy trinity of my CF survival to reach 48 with my original lungs has been unstinting commitment to my medication, regular exercise and the power of the mind.

The latter part of this ‘power of three’ has been a slow burner over the last 10 years since I was diagnosed with CF-related diabetes. Up till my late thirties, I hadn’t appreciated how helpful my mindset and being more present were to my ongoing survival.

Creamy Butternut Squash Soup

Fall is coming in quick and for a lot of us that means more warming and comforting foods. Soup is one of those foods for me. These days I’m all about recipes that have fewer ingredients and are easy to prepare. The creamy butternut squash soup hits all those points and tastes incredible. The leftovers will also keep well in the freezer for around six months.

Creamy Butternut Squash Soup

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