Dear Friends and Family, October, 2009

We send our Fall greetings. October has been unusually cool, but the trees have been spectacular! With the changing of the seasons comes the Cystic Fibrosis Bowl-for-Breath. Our family has participated in this event for over 30 years (Linda, Jim, Brent, Derik, girlfriends, Misty (Derik’s wife), Linda’s dad, cheerleader/Linda’s mom (Katie), and our niece - Allison.

BRENT: Is beginning his 6th year as a southern boy. He loves playing soccer outdoors year-round and many nights playing bass guitar. He also begins his second year on the board of the Charleston, SC chapter of the Cystic Fibrosis Foundation. He spent a week in the hospital on IV antibiotics and hand percussion therapy - he says it really “perked him up”! No critical problem - he just hadn’t felt 100% for a while.

Brent made an Ohio visit in September. It was great to have him in Buckeye country for a few days. While he was here, we attended an Ohio Northern University (Brent’s alma mater) vs. Otterbein College (where Allison is attending and in the marching band) game.

Oh... We can’t forget: Brent had his TV debut on Army Wives (Lifetime channel) - in a band, of course. Believe it or not, he already has another acting gig - In a movie with James Brolin (Brent is in a band, what else?). Still no lines, though...

DERIK: Has left cooking for management. He works for Sonic Restaurants and is enjoying the new challenges, especially when people don’t show up for work! He still enjoys creating desserts for “Pacetrees” and trying new recipes. He even helped Brent have a great date. Brent was cooking dinner and realized, 10 minutes before his date arrived, he didn’t have any salad dressing. A phone call to Derik enabled him to put together a dressing with what he had!

Derik still struggles to gain weight and keep his Pulmonary Function levels high, but no hospitalization this year.

Derik and Misty will have been married 10 years in March 2010 - a milestone for them. We can see how far CF research has come in just this new century.

Research News:

Brothers in Research: Unknown to each other, Brent and Derik participated in the same clinical study. They discovered this during one of their fairly regular phone conversations. One of them was on the real study drug and the other was on the placebo – of course they didn't really know this for sure, but could kind of tell by how they felt. Over the years, they have discovered that participating in research not only can provide an immediate benefit to them, personally, but also benefits the CF population.

Hypertonic Saline: YOUR CF DOLLARS AT WORK! In our 2006 and 2008 letters, I mentioned how surfers in Australia felt better after exposure to ocean salt water spray. Brent has started this therapy with inhaled supplements of sodium chloride in water and finds it helps, although he says time spent at the beach (breathing the salt air, of course) is more effective...

Liprotomase (formerly Trizytek): I mentioned Trizytek in our 2008 letter. This microbially produced, pancreatic enzyme replacement will replace current enzyme supplements produced from pig pancreas. One capsule of Liprotomase per meal would replace the 8-10 enzyme capsules Derik currently takes at every meal. Anyway, this drug finished Phase 3 clinical trial and requirements for FDA submission are being completed. Eventually, maybe Derik can fill up on food and not pills!!

Ataluren: Ataluren is a “novel, small molecule compound” that can correct “nonsense mutations”. A “nonsense mutation” (you can get the complete definition at Wikipedia) is caused by genetic messages to create proteins being stopped prematurely. The whole message is there, it has just been changed to stop too early. This drug helps get by the mutation so the whole protein can be produced. A number of the CF defects are caused by “nonsense mutations”. A Phase 3 clinical trial began this past Summer and will continue into next Spring.

We invite you to join us in our money raising efforts. Please send your donations to us by November 20th. Checks can be made to The Cystic Fibrosis Foundation. Mail your check to:
James M. Pace
5358 Torchwood Loop W
Columbus, OH 43229
Or you can donate online to the Cystic Fibrosis Foundation. Just click on the link on our webpage at:
http://jimpace.eml.cc

Together we can make a difference in many lives and conquer this disease.

Thanks for your support,

Jim and Linda Pace (and the rest of the Pace family: Derik, Misty, and Brent)

PS: More information about cystic fibrosis research is available at the CF Foundation web site at: http://www.cff.org

PPS: Would you like to reread some of our previous year’s letters just to see how things have changed (or how our letters keep getting longer? All of our letters back to 1996 (with the exception of 2001 - don’t know where it went...) are now available at: http://jimpace.eml.cc