Dear Friends,

The years go by..., but we will never forget December, 1978 - that is when the words "cystic fibrosis" became a part of our everyday vocabulary. 26 years later, we are still committed to helping find a cure and make life better for those with CF.

Pace boys men update (from Linda): Brent is now 29 and has left Ohio for a warm and sunny home in Charleston, South Carolina. His move in November, 2003 changed his medical care from Children's Hospital in Columbus to a clinic just a few blocks from his home in Charleston. When he's not being an engineer at BP Chemical, he plays in a band called "Part Time Heroes". We think Brent and his zest for living make him a FULL TIME hero!

Derik is 26 and continues his love for cooking (and Misty, too). You would love to taste his crumble topping apple pie, made with apples he picked fresh from a local orchard! Derik has had many tests this past year to diagnose why he is so tired and has sharp pains in his side. The results have pinpointed slightly low thyroid levels and oxygen at night seems to help. It also appears he will have his gall bladder removed. All the same, Derik jumps in on ANY clinical trial he can!

Research Update (from Jim): I'll admit to being selfishly excited about some of the news this year because it gives me hope that Brent and Derik will benefit from some of the research!

First of all, a little background: The gene defect which causes CF prevents a protein (called the CFTR protein) from transporting sodium and chloride in and out of the cell properly. This makes the sweat in CF kids very salty and, more importantly, makes the mucous in the lungs and pancreas (for example) very thick and sticky. That's bad! Infections, difficulty breathing and digestive problems are often the result!

Some of the research looks for a way to correct the defective gene. Other research focuses on alternative ways to make the sodium and chloride (which, by the way, form table salt) flow in and out of the cell more normally.

One company, Vertex, using "high throughput screening" (refer to last years letter or write to me for a copy), is focusing on two categories of compounds to do this. "Potentiators" help the CFTR ion channel work better, while "correctors" get the channel to the surface of the cell where it needs to be. Their research shows improvement in the laboratory, but obviously it will be some time before we see any of these products in clinical trials!!

But a common spice may work, too!! Laboratory testing shows that a compound called "curcumin" activates the CFTR protein and restores chloride movement. Curcumin is what makes the spice "turmeric" yellow and gives it it's strong taste. It is also found in curry and mustard! So, maybe what we need to do is convince Brent and Derik (especially Derik) to switch from catsup to mustard...

"When I was very young, most of my childhood heroes wore capes, flew through the air, or picked up buildings with one hand. They were spectacular and got a lot of attention. But as I grew, my heroes changed, so that now I can honestly say that anyone who does anything to help a child is a hero to me."

from The World According to Mister Rogers by Fred Rogers

Thanks for being heroes to CF kids (and adults, too)!! YOU support the research that searches for a cure and improves the lives of patients with CF.

Jim, Linda, Brent, Derik, and Misty Pace

PS: We are bowling on November 7, 2004. Please send your tax-deductible contribution to us made payable to The Cystic Fibrosis Foundation.

PPS: Remember, I just barely touch the surface of research in CF. If you want more, check out the CF Foundation web site at:

http://www.cff.org