"65 Roses" - Cystic Fibrosis

What Is Cystic Fibrosis?

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

clogs the lungs and leads to life-threatening lung infections;
obstructs the pancreas
stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Symptoms of Cystic Fibrosis

People with CF can have a variety of symptoms, including:

very salty-tasting skin
persistent coughing, at times with phlegm
frequent lung infections;
wheezing or shortness of breath
poor growth/weight gain in spite of a good appetite
frequent greasy, bulky stools or difficulty in bowel movements.
Statistics

About 1,000 new cases of cystic fibrosis are diagnosed each year.
More than 70% of patients are diagnosed by age two.
More than 40% of the CF patient population is age 18 or older.
In 2006, the predicted median age of survival was 37 years.

"Sixty-five Roses" Have you ever heard the expression "65 Roses®"? Many haven't, "65 Roses" is what little children suffering from Cystic Fibrosis call their disease. As the following story illustrates, the 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 CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-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 asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless. He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses." Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. 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.		For those who visit this site, know this site is my hobby and a gift back to the community I have been a part of since childhood. I am also a grandmother of 3 including 5 year old Harley who has Cystic Fibrosis. This is a reminder to many and new to some, On May 21,2011 our family and friends will be participating in the Great Strides Event in Baton Rouge and raising money and awareness for the CF Foundation. Here’s where my special request comes in…I am asking you to help me meet this goal by making a contribution that will support the research and care programs of the CF Foundation and helpfind a cure for Harley. She and 30,000 others like her need our help. It’s important for you to know that the CF Foundation is a very efficient organization and that more than 88 cents of every dollar of revenue raised is used to support CF research, care and education. This year Harley hit a new marker in her life. She started Kindergarten at South Live Oak. There was a time when a infant was diagnosed with CF they were not expected to live to ever see school age. So, we are very thankful for the advances made so far. We are thankful she is able to attend school and do all the things other children her age do. Yet, we are always reminded that she could become sicker at any time. This year was the first time since she was two that she has had two hospitial visits. Yet we are still thankful, thanks to the advancement in treatments she was treated and home quickly. That is why we continue to ask for your support. If you would like to make a donation please CLICK TO DONATE button at the top of this page. If you would like to send a check, please make it out to the CYSTIC FIBROSIS FOUNDATION and send it to: Jackie Williamson 7387 Impson Drive Denham Springs, LA. 70706 Again, please know every dollar counts and we are thankful for anything you can give. Thanks and may you and yours be blessed, Jackie Williamson
What Is Cystic Fibrosis? Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that: clogs the lungs and leads to life-threatening lung infections; obstructs the pancreas stops natural enzymes from helping the body break down and absorb food. In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond. Symptoms of Cystic Fibrosis People with CF can have a variety of symptoms, including: very salty-tasting skin persistent coughing, at times with phlegm frequent lung infections; wheezing or shortness of breath poor growth/weight gain in spite of a good appetite frequent greasy, bulky stools or difficulty in bowel movements. Statistics About 1,000 new cases of cystic fibrosis are diagnosed each year. More than 70% of patients are diagnosed by age two. More than 40% of the CF patient population is age 18 or older. In 2006, the predicted median age of survival was 37 years.
Thanks to all who supported the Great Strides Event 2010
Harley's Crew 2010

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