Cystic Fibrosis Support
We do a lot of different things for Cystic Fibrosis, my nephew Seth Galvin who is 5 years old. Has this and we found out about 3 years ago and it is a terminal disease that affects about 30,000 children and adults. I have a link on this site for you to read upon Cystic Fibrosis, in hope that we can raise Donations to help with research so they live a longer and have happy healthy lives.
There are many ways in which you can support the CF Foundation as we continue on our journey toward a cure. With your help, we can add "tomorrows every day to the lives of those with CF."
Cystic fibrosis (CF) is a life-threatening genetic disease affecting approximately 30,000 people in the United States. CF occurs in approximately one of every 3,200 live Caucasian births (in one of every 3,500 live births of all Americans). About 1,000 new cases of CF are diagnosed each year. More than 80 percent of patients are diagnosed by age three; however, nearly 10 percent of newly diagnosed cases are age 18 or older.
Adults with CF may experience health challenges such as CF-related diabetes and osteoporosis. CF also can cause reproductive problems -- more than 95 percent of men with CF are sterile. But, with new technologies, some are becoming fathers. Although many women with CF are able to conceive, limited lung function and other health factors may make it difficult to carry a child to term. When CF affects the pancreas, as it does in the majority of patients, the body does not absorb sufficient nutrients needed to grow and to thrive. Most people with CF eat a high-calorie diet and take replacement vitamins, and approximately 90 percent of people with CF take pancreatic enzyme replacements to help them absorb nutrients in digestion.
The Cystic Fibrosis Foundation, headquartered in Bethesda, Md., is a donor-supported, nonprofit organization committed to finding therapies and ultimately a cure for cystic fibrosis, and to improving the lives of those with the disease. In 1955, concerned families established the CF Foundation hoping to find a cure for this baffling and mysterious disease.
Today, 50 years later, tremendous progress has been made in understanding CF and improving the lives of those with the disease. In 1955, children with CF usually did not live long enough to attend elementary school. Today, according to the CF Foundation’s National Patient Registry, the median age of survival for people with CF is in the late 30s and more than 40 percent of the CF population is age 18 and older. Many people with CF are living into their 30s, 40s, 50s and beyond. In the last four years alone, more than five years have been added to the median survival age of CF patients. In 1955, there was no centralized care system for CF patients.
Today, the CF Foundation accredits more than 115 care centers at major teaching and community hospitals, offering comprehensive, quality diagnosis and care nationwide -- including 94 programs specifically for adults. Care center staff includes physicians, nurses, nutritionists, respiratory therapists, social workers, genetic counselors and other medical professionals. In 1955, very little was understood about this disease. Today, the basic genetic defect that causes CF has been discovered, an arsenal of remedies have been developed to help treat it, and the CF Foundation’s “pipeline” is filled with more than 25 promising CF therapy candidates in clinical trials and six others in laboratory development.
