Cystic Fibrosis Great Strides - 2025

 

The Cystic Fibrosis Foundation Great Strides walk was on May 10 and it was, as always, a beautiful event. Ashley was off on the Senior camping trip and Thomas had a last-minute tennis tournament. So it was just me!

The 2025 Ambassador was a woman named Robyn (for more information) and she told her story before the walk. Wow - she is inspiring! She spoke about how a relatively new medication called Trikafta (for more information) has dramatically improved her quality of life. Trikafta has reduced the need for lung transplants, improves lung functions, increases lifespan, reduces hospitalizations and has helped CF patients view their disease as a more manageable chronic condition rather than a rapidly progressing life threatening disease. Isn't that wonderful!! The CFF (and the walk you have helped sponsor) played a critical role in the research and approval of Trikafta.

(Trikafta is made by a company called Vertex. In one of these weird coincidences, I listened to a PricewaterhouseCoopers Alumni event the following week and 1 of the 3 speakers was the CFO of ... Vertex (for more information). I'd never heard of them before. Connection!)

Unfortunately, Trikafta only helps 90% of CF patients. There are over 2,000 known CF variants. Continued funding for the Cystic Fibrosis Foundation will drive research into therapies to help all CF patients.

And, of course, I walk in memory of my friend, Tara, who was always able to see the light and the good, even though she was fighting the effect CF had on her body. 

Thank you so much for your donation. This was my 16th year and I plan to keep with it! For a list of this year's donors, click here. 

What Is Cystic Fibrosis?

Cystic fibrosis is a progressive, genetic disease that affects the lungs, pancreas, and other organs. 

There are close to 40,000 children and adults living with cystic fibrosis in the United States (and an estimated 105,000 people have been diagnosed with CF across 94 countries), and CF can affect people of every racial and ethnic group. 

In people with CF, mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene cause the CFTR protein to become dysfunctional. When the protein is not working correctly, it’s unable to help move chloride — a component of salt — to the cell surface. Without the chloride to attract water to the cell surface, the mucus in various organs becomes thick and sticky.

In the lungs, the mucus clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure, and other complications. For this reason, avoiding germs is a top concern for people with CF.

In the pancreas, the buildup of mucus prevents the release of digestive enzymes that help the body absorb food and key nutrients, resulting in malnutrition and poor growth. In the liver, the thick mucus can block the bile duct, causing liver disease. In men, CF can affect their ability to have children.