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Harlem resident hopes to make "Great Strides" against disease

Even something as simple as breathing is a little different for Alex Johnson.

Twice a day, the 18-year-old Harlem resident has to wear a special inflatable vest that rapidly pumps air in and out, shaking his chest. All the while he inhales a cocktail of medications, hoping that both will help clear the abnormally thick, sticky mucus from his lungs.

Alex is one of more than 30,000 people in the United States diagnosed with Cystic Fibrosis, a genetic disease that clogs the lungs and affects the digestive system. More than 40 families in the Augusta area are directly affected by the disease.

Organizers of the Great Strides event - a CF walk similar to the Relay for Life - hope to raise $35,000 to help fund additional research toward treatments and a potential cure.

The event will be held at 8:30 a.m. on May 6 at Savannah Rapids Pavilion in Augusta. Alex hopes for a large turnout.

"I can't say that it's more important than anything else like breast cancer, finding a cure for that. I can say that it's important to me because I live through it every day," said the Augusta State University freshman.

The fact that Alex is able to attend college is partly due to research funded by the Cystic Fibrosis Foundation. During the last few decades, the average life expectancy for CF patients has grown from 12 to 35 years. There are currently around 20 drug therapies in trials, but they say that's not enough.

"I think they're doing a good job. They're definitely putting the money toward good things, and they're smart people. They're figuring out what to do," Alex said.

While the research funded by events like Great Strides is aimed at lengthening and improving the lives of CF patients, that's not all the events are good for.

"It's important that we educate people and make them aware of the disease, so that as they're planning families and as their children grow they know to test for Cystic Fibrosis and what it is and how to look for symptoms," said Katie Mills, director of special events for the CF Foundation's Georgia Chapter.

Alex's family knew to test him as an infant. His older brother, Phillip, was diagnosed with CF when the family changed doctors because their original pediatrician wouldn't test him. His parents were two of the 10 million unwitting carriers of the recessive CF gene in the U.S.

Phillip succumbed to CF nearly two years ago at the age of 19. As Alex approaches that age, the loss of his brother weighs heavily on his mind.

"I've thought about that before, and it's scary to think about," he said.

But what he deals with day-to-day is just as difficult. The therapies are nothing compared to the treatment of others who know about CF and are overprotective as well as those who aren't familiar with the disease.

"Sometimes for me it's hard as far as other people thinking that é─˛Hey there's something wrong with that kid,' just because I do cough on a regular basis," Alex said, adding that it can be even more difficult to breathe during physical activity.

Ms. Mills is familiar with those complaints from CF patients. Seeing their plight is the reason she wanted to help to fund the search for a cure.

"My family has been involved with the Cystic Fibrosis Foundation since I was six," she said. "...I've seen it from where kids didn't live to be two to now where we have adult CF patients like Alex coming out."

That relative growth in awareness has also sparked increased participation in fundraisers. Great Strides started in 1989 with 75 events. Last year, 500 Great Strides events across the country raised $28 million.

The Augusta-area walk - one of nine in Georgia - raised $32,000 last year. More than 90 cents of every dollar goes directly to fund research. Alex said while the money is important, it's not the only thing people can do.

"I just hope they realize how much of a help they are no matter what they do. Even their thoughts and prayers are good if they can't physically or financially be able to do anything else. Prayer is most important," he said.

Anyone wanting to get involved or donate to the upcoming Great Strides event can call the Georgia Chapter of the Cystic Fibrosis Foundation at 1-800-476-4483 or visit the website at www.cff.org.



Web posted on Wednesday, April 5, 2006













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