October, 2013

Dear Friends and Family,

Fall is here in Columbus, Ohio...apple picking, pumpkin carving, OSU football, and our 35th year of participation in the Cystic Fibrosis Bowl for Breath. This year our family will join many other bowlers on Sunday, November 10 as we all try to "Strike Out C.F."

Whether you are long time supporters or have just recently joined with us, our Cystic Fibrosis team is the best! We are always in awe of the support we have had since Derik's diagnosis in December, 1978. Brent was diagnosed two weeks later. We raise money for CF, not to focus on our family, but to make the lives of all CF patients longer and healthier. We look forward to the day when there aren't fundraisers for research because a cure has been discovered.

The Family Update:

In May 2013, we lost a big time CF Supporter - Linda's mom, Katie Whitehouse. In her 90 years, Katie showed her love in many ways. She was an avid fundraiser for the disease her two grandsons have as well as learning how to give the boys their treatments and medicines. We will miss our long time supporter and we dedicate our 2013 fundraising efforts to Katie.

Brent (38): Brent has called Charleston, S.C. His home for 11 years. He loves the weather, the food, the music, his many friends, and his girl friend, Christine. Brent and Christine are both very active in the Charleston Cystic Fibrosis Foundation. Each of them plan and host a major fundraising event for CF. Each year. In 2013 their efforts helped raise almost $75,000 for CF research. Brent has worked for B.P Chemical since his co-op days in Lima, OH in 1995. Frequent family visits down south keep the northern part of the family very happy! Brent has been "the poster boy" for a new drug that was recently FDA approved. He flew to Washington D.C. to speak on behalf of the benefits of the drug (both boys were involved with the human trials of the drug). Brent also flew to Atlanta to speak to the researchers on his life with CF.

Derik (35): If it can happen to someone..., it will happen to Derik! In July, Derik had emergency surgery for a twisted bowel with a 6 day hospital stay and then...after being home 2 days, the same symptoms occurred and he had a second surgery with a 7 day hospital stay. There was a 1% chance of a recurrence after the first operation! After a month off work and rehab at Childrens Hospital, he is getting back to normal. We still are uncertain if there is a connection to CF. Derik continues his cooking career and his wife of 13 years, Misty, continues with her Montessori teaching. They are busy being foster parents!

As in past years, Derik and Misty will have a bake sale at the bowling alley. All the money raised goes to CF Research. If you've never had baked items from Pacetrees, try some soon!

Jim and Linda: We have always been huge supporters of our children. We knew they would grow up and have to manage time for treatments, seek out insurance coverage, continue clinic checkups, and even work in hospitalizations. They both continue to participate in clinical trials. We are proud to be their #1 supporters and watch them grow and mature as they manage their CF

Linda is ready to bowl this year after coming off a year of broken bones in her foot that began healing, she fell again, and ended up having surgery. After a lime green and purple cast, two scooter rentals, two uses for the walking boot, and lots of rehab, she is ready to go!

Jim has added "tree taker downer" to his resume along with "furniture mover" and "ceiling painter." He will take time from his over 60 program at OSU to bowl! He continues to help many home owners with their computers. Star gazing is also at the top of his Do To list!

The Cystic Fibrosis Foundation provides funding for and accredits more than 110 cystic fibrosis care centers and 55 affiliate programs nationwide, including 96 programs for treating adults with CF. Ohio has 6 centers, each providing pediatric AND adult care programs. Outside of the US, you can find over 358 more centers. In addition to patient care, many CF centers have research projects connected to the centers. Your generous donations help fund these research projects!

Research Update:

Frequent Flyer program for CF: No, it's not airplane miles. Instead, a pilot study enrolled CF patients in a program with physiotherapy, dietary support, and personal training sessions in their local gym. The participants spent less time in the hospital receiving antibiotics and their exercise capacity increased!

Saltwater Nebulizer: In the past years I've mentioned how surfers with CF feel like they breathe better after a day in the surf. Research confirmed the saltwater mist treatment provided real benefits. A new device, called the "tPAD" (trans-nasal pulmonary aerosol delivery) helps CF patients (surfers or not) get the same benefit while they are sleeping. The biggest problem was building a system that would deliver tiny droplets (a mist) of saltwater through a long tube into the nasal cavity so they could penetrate deep into the lungs. The initial clinical trial was very successful and quickly expanded so more patients could be treated!

CF Average Life Expectancy is 40. NOW WHAT? Well, now they're living long enough to get other complications - like low bone density - causing osteoporosis and bone fractures. To treat it, patients are given calcium and vitamin D. But sometimes that isn't enough. For those who need more help the drug alendronate (used to treat bone loss) has been proven safe for use with CF patients and can be used with other vitamin supplements fail.

Hyperswarming Bacteria - A GOOD THING? Sounds like a horror movie!! Many bacteria move around using a little tail called a "flagellum". But if they develop multiple "tails", they can move around and get nutrients better. Bad news, right? Not necessarily. Moving around MORE means they don't solidify into a solid "biofilm". Research showed this was the case with Pseudomonas aeruginosa, a particularly nasty bacteria that colonizes the lungs of essentially ALL CF patients. So, if research can find a way to make P. aeruginosa develop multiple "tails", they might be easier to treat. Maybe I'll have more to say about this next year...

More about Biofilms: And P. Aeruginosa. This bacteria also needs iron to build a biofilm in the lungs of CF patients. Iron is present in CF lungs as both Fe(II) [ferric iron] and Fe(III) [ferrous iron] (get out your chemistry books...). Researchers are now exploring the possibility of disrupting the iron (both forms) supply to P. Aeruginosa. Lock up the iron and make them grow lots of tails. Then make them get colds - oh, wait - that's martians... You know, "War of the Worlds".

Please join us in our money raising efforts. We encourage you to use your credit card to donate online. Click on the orange "Donate Now" button near the bottom of our web page at: http://jimpace.eml.cc The "Donate Now" button will take you directly to a secure page at the CF Foundation dedicated to recording our collections for CF.

If you prefer, you can send your donations to us by November 21st. Checks should be made to The Cystic Fibrosis Foundation. Mail your check to:

James M. Pace
5358 Torchwood Loop W
Columbus, OH 43229

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, Brent, and Christine)

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 but one of our letters back to 1996 are available at: http://jimpace.eml.cc

PPPS: Do you read the whole letter or just skip it and send a check? Please let me know either by email (cfletter@jimpace.eml.cc) or with a little note with your check - you ARE sending a check, right? Thanks, Jim