Dear Friends and Family,

In our quest to find new treatments and a cure for Cystic Fibrosis, there is no such thing as doing enough or doing it fast enough. For our family, that means it's time to call on you again to help our precious Mackenzie. As we see her grow and thrive, it reinforces our resolve that she have the best life possible with the least amount of worry or stress caused by her disease. Right now, all she knows is that she has a "mucus" problem. Only yesterday, she asked us to buy her some Mucinex she saw advertised on T.V. to make her better! If only it were so easy.

Since this is the 5th year we have asked for your help, we thought we would give you a refresher on what Mackenzie faces. CF is an inherited, chronic disease that affects the lungs and digestive system. A defective gene and its protein product causes the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening infections, as well as obstructing the pancreas and stopping natural enzymes from helping the body break down and absorb food. We have been so blessed in that she has not been in the hospital in 1-1/2 years and although she has had lung infections (missing a month of preschool last fall), she has responded to treatments and her breathing capacity is making her doctors very proud! We are determined to keep that statistic intact.

The single most important discovery in Cystic Fibrosis research was the isolation of the CF gene in 1989. However, within the last year Vertex Pharmaceuticals has had incredible results with a drug that targets the basic defect of the faulty CFTR protein, the single gene that causes CF. Although the gene mutation they studied is not the mutation Mackenzie has (there are over 1000 mutations of the single gene), this result has been exciting news in the CF community and has been hailed as the most important breakthrough since the isolation of the gene itself. All other current therapies treat only the symptoms, not the root cause. So, there is so much hope on the horizon.

As for Mackenzie herself, she continues to do everything little girls do --- her first soccer game yesterday; lots of princess outfits and dress-up; Little Ponies everywhere; fighting with and then kissing her sister; negotiating to stay up late; climbing, jumping, running, sliding, dancing; going to preschool every day; doing crafts; going to the library -- all of which are only sidelined occasionally for treatments and enzymes. All and all, she is really a very normal little girl. And, we want to keep it that way.

"Once you choose to hope, anything is possible." -- Christopher Reeve

Sincerely, Jay and Carrie Marquis