I AM NOT AFFILIATED WITH NOR HAVE I RECEIVED ANY COMPENSATION FROM ANY OF ORGANIZATIONS SEEN BELOW. I SEE THEM AS GREAT RESOURCES THAT SUPPORT THE CF COMMUNITY AND PROMOTE CF AWARENESS. PLEASE VISIT THESE WEBSITES AND HELP IMPROVE OUR QUALITY OF LIFE:
What Is Cystic Fibrosis? ~ Taken from the Cystic Fibrosis Foundation website
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 and stops natural enzymes from helping the body break down and absorb food.
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; and
- frequent greasy, bulky stools or difficulty in bowel movements.
- About 1,000 new cases of cystic fibrosis are diagnosed each year.
- More than 70% of patients are diagnosed by age two.
- More than 45% of the CF patient population is age 18 or older.
- The predicted median age of survival for a person with CF is in the mid-30s.
Boomer Esiason Foundation
The Boomer Esiason Foundation is a dynamic partnership of leaders in the medical and business communities joining with a committed core of volunteers to heighten awareness, education and the quality of life for those affected by cystic fibrosis, while providing financial support to research aimed at finding a cure.
Blooming Rose Foundation
Created by CF parent Kat Quinn, BRF gives hope to families immediately following diagnosis, fund raises to positively reach a vast array of individuals and offer an online resource for individuals, families, and friends to find up to date research, links to encouraging websites and blogs as well as a way to connect with other families and adults with CF. Blooming Rose Foundation will talk with families about raising a child who is thriving with CF; the positive outlook and breakthrough treatment available now and on the horizon.
Breathe 4 Tomorrow Foundation
Founded by Sarah Morris, B4T is a designated 501(c)(3) non profit organization founded to “make life for those living with Cystic Fibrosis easier one breath at a time” by helping with the financial struggles families face when dealing with Cystic Fibrosis.
Cystic Fibrosis Foundation
The mission of the Cystic Fibrosis Foundation, a nonprofit donor-supported organization, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.
Rock CF Foundation
A 501(c)3 nonprofit corporation. Founded by Emily Schaller, the Rock CF Foundation is dedicated to increasing the quality of life for people with Cystic Fibrosis. With the help of a core group of volunteers, the Foundation utilizes the arts, entertainment, fashion and fitness to support research initiatives and heighten public awareness in the fight against cystic fibrosis.
CF Social Networking Sites
Cystic Life
Created and run by Ronnie and Amanda Sharpe, this social networking site is dedicated to anyone whose lives have ever been touched by Cystic Fibrosis. Their mission is to make Cystic Fibrosis personal for those not personally affected by it and to make an immediate impact in the lives of the CF community.
