Davenport, April 2009 - Randy & Amy Johnson of Orion, IL know the heartaches and challenges of being parents to a child with a fatal disease firsthand: their son, Dillon, 15 yrs old, suffers from the devastating disease cystic fibrosis. "Although to look at Dillon, one would see a very normal, active 15 year old, but the reality is that combating the effects of cystic fibrosis and keeping him healthy involves daily medications and time consuming treatments to break up the mucus in his lungs and fight infections as well as enzyme pills to help him digest his food properly." said Johnson.
CF is a genetic disease that affects tens of thousands of children and adults in the United States. More than ten million Americans are unknowing, symptomless carriers of one copy of the defective CF gene: It takes two copies of the gene for a child to be born with CF. The defective gene causes the body to produce a faulty protein that leads to abnormally thick, sticky mucus that clogs the lungs and results in life-threatening lung infections and respiratory problems. The mucus also obstructs the pancreas, causing inability in the body to absorb nutrients in food. The median life expectancy has improved from early childhood in the 1950s to the mid-30s today; however, most individuals with CF must battle lung disease for their entire lives.
"When Dillon was diagnosed with CF at 2 1/2 years, I started to campaign on behalf of the Cystic Fibrosis Foundation's GREAT STRIDES Walk in 1998. I had set a goal of $1,500, but ended up raising over $3,000! I was amazed at how our family and friends supported us then and continue to do so today. Many people say that fundraising is hard," said Johnson, "but that's not how parents with a child who has a fatal illness see it. While we're glad that CF research has increased the life expectancy of CF patients to the mid-thirties, that's not good enough for us!"
The GREAT STRIDES Walk raises millions of dollars nationally each year to fund vital cystic fibrosis (CF) research and care programs and is the CF Foundation's largest and fastest-growing event. The Quad Cities Walk will take place on April 25, 2009 at the Scott County Park - Whispering Pines Shelter. Registration begins at 9 a.m. and the Walk starts at 10 a.m. In addition to the walk, there will be food and music, kids activities, and a silent auction.
This year, GREAT STRIDES Quad Cities plans to raise over $40,000 at the Walk to fund the cutting-edge research that has the potential for making a profound impact on the lives of children and young adults with the disease. More than 90 cents of every dollar raised is used to fund CF research and care programs.
"Although the CF Foundation is proud of its achievements in its 50-year history, lives continue to be lost every day to cystic fibrosis. The need for financial support is more critical than ever, said Claire Scholl, Director of the Iowa Chapter. "For the first time in the CF Foundation's history, scientific opportunities are coming at a pace that exceeds the ability to fund them. GREAT STRIDES is a community event, and the community is uniting now to keep the funds coming and the momentum of research advances going."
Call the Iowa Chapter at 515-252-1530 for more information, or visit our website at www.cff.org.
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