It’s that time of year again. On Saturday May 15, 2010, we will be hosting the Great Strides walk to cure cystic fibrosis. It will once again be held at the Heritage Center. The walk begins at 10:30 with registration opening at 9:30. For the last 12 years I have been writing to our friends and family to help raise money for the Cystic Fibrosis Foundation. As you know, our 12 year old son, Nat, has this disease and we are determined to fight to ensure he has a full, active life.

Cystic fibrosis is a genetic disease that affects the pulmonary and digestive systems of those who suffer from it. CF patients have an abnormal CFTR protein that causes abnormally thick mucus which leads to frequent lung infections. As the disease progresses, lung function steadily declines. More than 10 million Americans are unknowing, symptom less carriers of the defective CF gene. An individual must inherit two defective CF genes -- one from each parent -- to have CF. People with CF have a variety of symptoms including: very salty-tasting skin; persistent coughing; wheezing or shortness of breath; an excessive appetite but poor weight gain. Symptoms vary from person to person due, in part, to the more than 1,000 mutations of the CF. In the 1950’s children with CF rarely lived to attend elementary school, but now the average life expectancy is more than 37 years. Currently there is no cure.

Nat's health continues to be very good. He is as active as any other 12 year old. He participates in a variety of sports and prefers to keep busy rather than sitting still, Recently, Nat has started playing lacrosse and continues playing soccer, basketball and skiing. This summer he will be training to run the Philadelphia Half Marathon which is held in September. We have no doubt of his ability to complete this race, the problem is finding a good running partner. He has informed me, his mother, that I am too slow for him. Nat is determined to pack as much fun and adventure into every day of his life. His motto is to live every day as if it were your last, and he does just that.

Recently, I attended a lecture given by Robert J. Beall, PHD, President and CEO of the Cystic Fibrosis Foundation , and Albright College alumnus. The lecture was both fascinating and encouraging. He spoke of how the CF Foundation has adopted an innovative business approach to drug discovery and development that is emulated by other non-profits, and recognized by organizations including the National Institutes of Health and publications such as Forbes and USA Today. He also spoke of there being more than 25 potential new therapies in the Foundation’s drug discovery and development pipeline, including a pill that patients could take dally to correct the basic defect in the CF gene. This drug is still in clinical trials but its outlook as a future treatment looks promising. By continually adding to the pipeline, the Foundation increases the chances of producing successful therapies and finding a cure.

Our mission as a family is to find a cure for CF. One important way to fight this disease is raising money through the Great Strides walk. Please consider joining us on May 15, 2010, at the Heritage Center. Registration begins at 9:30 a.m., and the walk starts at 10:30 a.m. If you are unable to attend, please consider sponsoring Nat’s team by donating to our walk. Checks can be made payable to the Cystic Fibrosis Foundation or you can visit Nat’s page directly at http://www.cff.org/Great_Strides/LisaGallen. Our family thanks you for your continued support. We believe that you are making a huge difference in Nat’s life and all of the other children and young adults that suffer from this disease.

Sincerely,

Lisa, John, Sam & Nat tP.S. If you have a minute please take a look at an essay that Sam wrote about Nat. It gives a great perspective to what it is like being and living with Nat!

Nat

by Sam Gallen

I stand up from my spot on the couch after hearing a repetitive bouncing sound coming from outside. I look out the window and see my eleven year old brother, Nat, dribbling and shooting a basketball in the driveway. He is the most determined person I have ever met. At his previous basketball game, he could not quite perfect his shot, so he works hard at making himself better. As he runs inside, he is wearing an F.C. Revolution hooded sweatshirt (F.C. is his select soccer team), a pair of black adidas sweatpants, and an England soccer beanie hat. He is kind of vain about his looks when going to school or going anywhere in public. I do not mean snobby, or anything. I’m saying more like he likes himself to look presentable.

Nat loves to watch “Sports Center” on ESPN. He is a very active child. As we sit down to watch a basketball game, I am reminded of all of the things Nat does in sports. A couple of years ago, Nat participated in wrestling for Wyomissing, intramural and travel team basketball, he swam for the Reading YMCA, and to top all of that off, he played indoor soccer for F.C. Revolution all in one Winter. Some may call that much activity insane, but Nat enjoyed every moment of it. No longer does Nat wrestle, but he continues to participate in the other three sports.

“Sam, let’s watch an episode of Monk. It’s the best show in the history of television!” Nat insists. I cannot resist “Monk”, which is a family favorite show. Ever since Nat first saw “Monk” he has insisted that he is obsessive-compulsive just like Adrian Monk, just not to the same extremes. Nat organizes things in the pew at church, his golf clubs are in perfect order in his bag, and he even is precise in ordering his clothes in his closet. I guess he just hasn’t had time to organize his desk yet, though!

When “Monk” ends, Nat has to come upstairs before bed to do his medicines for Cystic Fibrosis. I see Nat sitting on a chair upstairs, wearing what looks like a vest that shakes up his mucus, and he has a nebulizer in his mouth. After twenty minutes of those treatments, he has to take multiple other medicines daily. Nat looks like an average kid, with the exception of his cocker-spaniel like hair, and nobody could tell that he suffers from a life-threatening disease. He doesn’t let any of his disabilities stop him socially or in school, where he is a straight A student.

Nat and I go to bed, quietly discussing our day with each other. I start to read a little bit, but as I try to fall asleep it is difficult because Nat is snoring loudly; an effect from Cystic Fibrosis. I know how proud I am to be Nat’s brother. I begin thinking of our day tomorrow, and remember how hectic our lives are; primarily from Nat’s schedule. I try to look for the positives in Nat being extremely active, and I found one: My brother tries hard at everything he does even if he knows he might fail, and he faces a life-threatening disease everyday and never lets it define who he is.