Cystic Fibrosis Letter 2025 Please send us your donation by December 15, 2025

It’s fall again and that means the Pace Cystic Fibrosis fundraiser. Can you believe this is our 47th letter!

We are driven by a dream -
to find a cure for every
person with cystic Fibrosis

Many of you already know the drill:

  1. Read our family update.

  2. Find out about some of the latest research.

  3. Donate.

  4. Pat yourself on the back and WELCOME to our team.

Family Update:

Linda’s sister, Carol Tyx (Iowa City, IA) has been officially diagnosed with Cystic Fibrosis. Previously, she was treated for Bronchiectasis, was in a study about CF carriers, and had some further testing at the University of Iowa. Now now at 74 she joins our family’s CF patients, Brent and Derik. She has been doing aerosol and vest therapy and also takes Trikafta. Keeping chest infections controlled and away is happening.!

Jim and Linda’s life seems to be moving at “warp speed.” We still work with kids at elementary schools and have our church activities. And music is a big part of our lives with band for both of us and singing groups for Jim. Linda enjoys cooking classes and jazzercise. Jim still helps many “seniors” with their computer issues. We took grandson, Jeffery, on a summer adventure to Greenfield Village in Detroit.

Brent and Christine said good-bye to their beloved dog, Leia, who they had for 10 years. Now they do dog sitting in their home. To get away from the summer heat and humidity of the south, they spent some time in Washington. Brent turned 50 in April and in Pace style he had many celebrations. He continues working in Charleston for BP in Chicago, celebrating 30 years with the company. Brent had a “normal” Pulmonary Function Test (PFT) for the first time since his CF diagnosis...amazing! When the senior Paces were in Charleston we got to meet his doctor and team at a CF fundraiser..that was so special. Christine continues her work with the MacArthur Foundation in Chicago. They both have a passion for golf, gardening, and entertaining.

Derik, Misty, Zach, and Jeffery are a busy family with two teenagers (Jeff will be 13 on Nov. 14) Derik experienced another twisted bowel that required emergency surgery. Misty and the boys were in South Carolina at the time, so his parents(us) were on duty. Derik is also transitioning to the new CF one dose drug, Alyftrek (approved by FDA Dec. 2024). This will replace his two doses of Trikafta. One of the things they will be looking at is the amount of salt he produces...will it be less? Meanwhile, the nephropathy in his feet has increased from his CF induced diabetics and he also has weakness in his legs. He is learning to drive with hand controls and working on getting some leg braces. Misty is in her 11th year of teaching 3rd grade. Her new best buddy is their boxer mix, Eddie who joined the family this summer. Zach is in 10th grade and trying to figure out this teenage life. Jeff is in 7th grade and plays trumpet in the band.

Research Update:

There is so much going on in the world of CF research, we can only touch on a small portion. So here goes:

CF Trivia Question: What is this “F508del” (or “delF508”) I hear so much about in CF?

Answer: "F508del" is a specific CF mutation that about 90% of people with CF have (including our sons – Brent and Derik).

So, "F508del" in the CF gene says there is a specific chemical (“F”) at position 508 that's been deleted. Throw this into a conversation and people will think you're a CF WIZARD!

Note* (all you organic chemistry nerds will probably recognize the "F" as an abbreviation for the amino acid "phenylalanine" and for anyone else, now you know!)

Inhaled gene therapy clinical trials

As we've mentioned several times over the years, inhaled therapies for CF are a great way to test new therapies. Breathe in a vapor (after it's been tested safe) and see what happens! There have been many attempts over the years. Some have shown promise, but with unacceptable side-effects. Nonetheless, new and/or improved approaches continue to be tested. There are currently 14 different studies supported by the CF Foundation in various stages of testing.

Some of the Phase Three clinical trials are testing a currently available treatment (Trikafta – check any or all of our letters from 2019 on), for it’s effectiveness and safety in children 6-11 and 2-5.

Before 1938, when CF was first described, most infants died before they were 18 months old. After World War II, antibiotics offered modest improvement in survival rates. By 1954, median survival rates (for children born in that year) were estimated at 4-5 years. About the same time, CF Centers were formed. Collecting many patients under the care of a few physicians allowed for increased experience and better management of the disease. By 1978, the estimated median survival nationwide had climbed to 11 years. In 2012, the first CFTR modulator was approved (more about CFTR modulators in our letters from about 2013) and the estimated median survival nationwide for a child born with CF was 40 years.

And finally, when Brent and Derik were diagnosed with CF (ages 3 ½ and 6 months), the estimated median survival age nationwide for a child born with CF was about 11. The estimated median survival age for CF children born now is 65! Brent turned 50 this year and Derik 47. They have also benefited from the CF development over the years.

(The National Library of Medicine has a great article titled “Increasing life expectancy in cystic fibrosis: Advances and challenges” - click here to read the article. I used this article as a resource in some of the preceding paragraphs.)

How to Donate:

The easiest way to donate from your web browser is to click here (or type “https://cf.glenabby.org” into your web browser) to go to the “CF Letters from the Pace’s” web page and click on one of the pictures at the bottom of the page!

You can also mail your contribution to us at:

CFF Annual Fund
c/o James M. Pace
6251 Abby Gate Ct
Westerville, OH 43081

Checks should be payable to “Cystic Fibrosis Foundation”

Please donate by December 15, 2025

With Love from all of us,

Jeffery, Zach, Misty, Derik, Christine, Brent, Linda, and Jim