November, 2014

Dear Friends and Family,

We have a new address:

6251 Abby Gate Ct

Westerville, Ohio 43081

STRIKE! SPARE! GUTTER BALL! These words mean that the annual Cystic Fibrosis Bowl for Breath was on Sunday, November 9. The Pace family participated for the 36th time! Our involvement began when Brent and Derik were diagnosed with Cystic Fibrosis in 1978. We join with many others in raising money for research and patient care for this incurable disease. Won’t you join us in helping all families with children, young adults, and adults who have Cystic Fibrosis?

The Family Update

Jim and Linda: We are sorry that our communication with you this fall is late, but we do have good excuses!...Jim and Linda moved on November 5... Downsizing from a 5 bedroom house has required lots of energy! Five days a week, we are the child providers for our two grandsons (more on them later). Jim is back at OSU this fall taking a Gemstones class under Program 60. Linda is involved in a community band, a flute trio, tutoring, and Jazzercise.

Brent (39): Brent has his own CF fundraiser in Charleston every spring. This year he raised $40,000. He has very supportive friends and employer (BP Chemical). Brent is celebrating 5 years with Christine Coode...who is another tireless fund raiser for CF events in Charleston. Brent’s health has been fairly good this year...a round of IV antibiotics was not as successful as hoped for, but a fungus was discovered in his lungs and treated with good results. Brent continues to be very involved in the management of his care...asking questions, seeking advice, and encouraging others that have CF. Brent and Linda shared three days in Chicago where mom and son caught up on life and enjoyed the food and sights.

Derik (36): As in past years, Derik and Misty had a bake sale at the bowling alley. All the money raised went to CF Research. If you’ve never had baked items from Pacetrees, try some soon! This year Derik and wife, Misty, continued as foster parents. They were foster parents to two boys, Zachary(almost 5) and Jeffery(2). They were a Thanksgiving blessing in November 2013. In May 2014, the boys became custody of Franklin County Children's Services and available for adoption. On August 27, in Franklin County Probate Court, the boys became official members of the Pace family. Misty is finishing her Masters Degree, teaching, and being mom. Derik is working at The Express Scripts Cafe, helping to coach Zachary’s T-ball and soccer teams, and enjoying being a dad. His health has been stable this year but he still has some unexplained tremors (not CF related). This part of the Pace family is building a house in Blacklick (on the east side of Columbus). Their house went into contract within a month of being for sale. Until their new home is completed, they will live in Jim and Linda’s Torchwood home.

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:

Lumacaftor and Ivacaftor (drugs developed by Vertex): Ivacaftor (formerly VX-770) is a drug used in treating CF patients with the G551D mutation. Our boys don't have this mutation, but read on. Ivacaftor was approved by the FDA in 2014. Lumacaftor (formerly VX-809) is a drug used in treating CF patients with the F508del (or delF508) mutation. This is the mutation Brent and Derik have.

Results from Phase 3 studies of ivacaftor in combination with lumacaftor showed significant improvement in lung function and other key measures of CF in people with two copies of the F508del mutation of CF, ages 12 and older. Vertex has submitted a New Drug Application to the FDA, with possible approval in 2015.

If you go back and read (or re-read) our letters from 2007, 2010, and 2012, you can follow some of the development of these drugs as well as get a brief primer on how CF works and why these drugs are important!

Actually, now would be a good time to go back and re-read ALL our letters. I do this practically every year. It's amazing to see where we were in the mid 90's and see where we are now – both as a family, and in the directions and side-tracks research has taken us on this CF ride.

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 December 1st. Checks should be made to The Cystic Fibrosis Foundation. Mail your check to:

James M. Pace
6251 Abby Gate Ct
Westerville, OH 43081

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, Zachary, Jeffery, 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