May is Cystic Fibrosis Awareness Month. It’s time our local community shines a spotlight on finding a cure.
Approximately 30,000 children and adults have cystic fibrosis in the United States (and about 70,000 worldwide). The disease occurs in one of every 3,500 live births of all Americans and about 1,000 new cases of cystic fibrosis are diagnosed each year.
What is cystic fibrosis anyway? Well, it’s a chronic disease that affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs, leading to life-threatening lung infections. It also blocks the pancreas and stops natural enzymes from helping the body break down and absorb food.
People with cystic fibrosis can have a variety of symptoms, including: persistent coughing, at times with phlegm; frequent lung infections; wheezing or shortness of breath; and poor growth and/or weight gain in spite of a good appetite.
Back in the 1950s when the Cystic Fibrosis Foundation was formed, very few children with cystic fibrosis lived to attend elementary school. Today, due to advances in research and medical treatments, people with the disease can now expect to live into their 30s, 40s and beyond. The predicted median age of survival is the mid-thirties.
The Cystic Fibrosis Foundation is a nonprofit, donor-supported organization. It funds and accredits more than 115 Cystic Fibrosis care centers nationwide. In 1989, scientists, with the support of the Cystic Fibrosis Foundation, discovered the defective gene that causes cystic fibrosis. This was a huge step toward finding a cure.
Today, the foundation has been working with the Food and Drug Administration in seeking approval of four therapies that are now a routine part of treatment regimens for many with the disease. The foundation is also supporting about 30 potential new treatments currently in development.
When I first heard the story of the “65 Roses,” I was pulled into learning more about the disease. As written on the Cystic Fibrosis Foundation website (www.cff.org):
“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.”
We come across stories like this every day, and sometimes we just skim through them. Some stay with us.
This one will stay with me for a long time.