"65 Roses" is what little children suffering from cystic fibrosis call their disease. These words are much easier for children to pronounce.

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had cystic fibrosis (CF).

Her duty was to call every civic club, social and service organization seeking financial support for CF research.

Mary's 4 yr old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his mom,"I know what you are working for."

Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis.

With some trepidation, Mary posed the question back to Richard, "What am I working for Richard?"

"You are working for 65 Roses", he answered so sweetly. Mary was speechless. She went over to him and tenderly pressed his tiny body to hers. He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."

For 36 years, "65 Roses" has been used by children of all ages to describe their disease. But making it easier for children to say doesn't make Cystic Fibrosis any easier to live with....

.....the ugly fact is that cystic fibrosis is the number-one genetic killer of children and adults in America today.

The 65 Roses story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.

The Cystic Fibrosis (CF) gene is found on the 7th chromosome. The most common defective mutation is F508. If the defect is not detected it is because there are between 700 and 800 different mutations of this disease. Currently, there is only a test for 72 different mutations. The CF mutation takes away one restriction site for the enzyme Mspl. There are two different ways to test for Cystic Fibrosis; the sweat test and the DNA-based test. The sweat test measures the amount of sodium chloride (salt) in the sweat. Children with the amount of 70 millimoles per liter are diagnoses with CF. In adults the sweat test loses it's diagnostic usefulness. The DNA-based test involves testing a DNA sample for up to a dozen relatively common errors in the cystic fibrosis transmembrane conductance regulator gene (CFTR) that cause disease. Most babies that have CF are diagnosed a few weeks after birth, but there are noted cases where the person has been 40 years old when diagnosed with CF.

There are many different symptoms and a great variation in how the symptoms show up in each individual. The most common symptoms are: Repeated respiratory infections of the lungs and nose (especially the sinuses), nasal congestion due to chronic sinusitis and/or polyps, enlarged finger tips known as clubbing, digestion problems, lungs have abundant respiratory secretions, frequent coughing, and wheezing while breathing. Some of the other symptoms that are normally associated with CF are: greasy, bulky, foul smelling stools; diabetes; arthritic pains; vitamin deficiency; gallstones; cirrhosis of the liver; lack of weight gain; sterility (especially in males); and stomach aches, heartburn, stomach pains, and hyper acidic stomach. There are many treatments of the disease, except CF is NOT yet curable. Scientists are on the verge of a cure with gene therapy. In gene therapy scientists must add enough normal genes to the CF airways to correct a significant amount of the defective cells. In the near future, this will be used as a cure in the medical world for CF and other genetic diseases. The pancreas, which secrets the enzymes, is usually defective at birth, therefore the patient needs to add enzymes to their diet. Other treatments of digestive problems are having high energy diets with vitamin supplements to replace the loss of fat and protein in the body. To help breathing the lungs need to be free of mucus. This is done by regular chest physiotherapy, breathing exercises, and physical exercise. Some drugs are used to help in this process. For CF patients who have entered lung failure the only option for them is a lung transplant, this does not cure everything but it definitely helps with breathing. Information from http://www.uwrf.edu/~aj68/poster.htm and from http://www.cff.org.

http://www.cff.org/

http://www.cystic-l.com/

http://www.65roses.com/updates.html

http://expage.com/page/auntsissiesboo6

65 Roses and a Million Prayers

http://www.people.virginia.edu/~rjh9u/cfsciam.html