We send our Fall greetings. With the changing of the seasons comes the Cystic Fibrosis Bowl-for-Breath. This will be our family's 32nd year to participate in this event. We will gather this year at the Columbus Bowling Palace on Sunday, November 14 to help Strike out CF!

BRENT: Brent has now called Charleston, South Carolina home for seven years. This year his work at the BP Chemical plant has been challenging with the BP Oil spill. He loves playing soccer almost year round and singing and playing bass guitar with many bands. We visited with Brent for five days in October (by the way, a very lovely time to visit). Brent continues his involvement on the Charleston CF Board and is in charge of a fishing fundraiser. He also talks with young adults with CF About their adjustment to independence. Brent has had some health challenges this past year, but IV meds, a "clean out" in the hospital, and a sinus surgery have him (he says) feeling better than he has for awhile.

Brent is very open about his illness. In addition to his involvement with the CF Board in Charleston, he host his own formal "champagne birthday party". Instead of presents for himself, he asks for donations for CF. BP Chemical matches these donations, allowing Brent to raise about $8,000 for CF from his "birthday party"! His openness spills over to his own health. His network of friends help him vary his personal regimen by helping him perform "manual percussion" postural drainage instead of using a machine which provides high frequency chest wall compression. He feels (and his doctor agrees) varying his therapy improves the ability to free his lungs of the sticky mucous caused by CF.

DERIK: From cooking to management and back to cooking. This past year Derik had an opportunity to go back to cooking and jumped at it. He now works at an Ohio Health Hospital and enjoys not only his job, but the health insurance, as well! A health issue not related to CF reoccurred last year. Derik had a seizure while driving and totaled his car, but luckily was not injured. His last seizure had been four years ago and he was on seizure medication. After not driving (again) for six months and an adjustment in his medication, Derik has not had any problems with seizures.

Derik has had problems maintaining his weight and pulmonary function for the last several years. Part of this related to a disorder he has called vocal cord dysfunction (VCD) which disrupted his sleep and caused problems with his nutrition. Through a discussion with his neurologist at a post seizure checkup, he learned about a possible side effect from a drug he was taking for acid reflux that could cause VCD. With a drug change, the VCD episodes disappeared, his energy level increased, and his appetite returned, along with weight gain (good news, in this case...).

Research News:

Many patients with CF take antibiotics continually to control the bacteria growth in their lungs. Many times this causes the bacteria to build a tolerance to the antibiotic used, requiring a change to stronger and stronger antibiotics. Since Brent's last hospitalization, he has started a different medication regimen. He takes one antibiotic for 6 weeks followed by no antibiotics for 2 weeks. He then starts a different antibiotic for another 6 weeks followed by no antibiotics for 2 weeks. He then repeats the cycle. The hope is this change in antibiotics will reduce the ability for the bacteria to build tolerance to the antibiotics used.

Cayston: One of the antibiotics Brent has started using is called Cayston. Cayston (aztreonam for inhalation solution) is a new inhaled antibiotic for the treatment of CF, approved by the U.S. Food and Drug Administration in February 2010. It is the first new inhaled antibiotic developed for CF in more than a decade. Cayston is used to improve respiratory symptoms in people with CF who have Pseudomonas aeruginosa.

Newborn Screening: Did you know that beginning in 2009, all 50 states and the District of Columbia now require newborns to be screened for CF?

VX-809: In our 2007 letter, I told you about a drug called VX-770. Cystic fibrosis is caused by a defective protein called CFTR (cystic fibrosis transmembrane conductance regulator). VX-770 helps the defective CFTR protein work better. But it won't work if it's not at the right place on the cell surface. The purpose of VX-809 is to move defective CFTR protein to its proper place at the cell surface. How does it work? Proteins have shapes. The defective CFTR protein doesn't have a certain fold in the right place. VX-809 makes it fold correctly. The combination of VX-809 and VX-770 get the defective CFTR protein to the right location on the cell surface and then make it work better!

We invite you to join us in our money raising efforts. Please send your donations to us by November 14th. 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 "Donate Now" button on our webpage at: http://jimpace.eml.cc

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

As always, 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 read (or 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