Cystic Fibrosis affects myself and 70,000 other people across the world who fight it every day. It's shortened the lives of thousands, including my amazing sister, Angela, who bravely lived with cystic fibrosis for 16 years. Please take a moment to read the info below and click on each these links so you can help each of these wonderful organizations and memorials.
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; and
- obstructs the pancreas and 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.
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.
My Blog Universe
Go to the tab on right side of my site to read all of the blogs that I read, many of which are CF-related. They cover all the bases: CFers from teens to veterans, CF Parents, transplant recipients, and more! You'll know which ones are CF focused because they are very upfront about EVERYTHING! :-)
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.
The Blooming Rose Foundation
Breathe 4 Tomorrow Foundation
Brian & Bobby Speak
camaraderie. They shared the triumphs, trials, and the tribulations that come from living with Cystic Fibrosis and eventually made their friendship public when they started this blog, writing letters back and forth to each other on it since 2005. Bobby unexpectedly passed away in the summer of 2009. I only knew him through his writing, but the reality of the situation took my breath away. Bobby and Brian's letters provided a doorway for others to walk through and learn from. Talk of medications and daily routines wove seamlessly into music and family events. Their blog was and is real life at its core. We are lucky to have the opportunity to read Brian & Bobby Speak.
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.
CF 2 Chat
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.
Matt Scales Music Fund
Matt Scales had a talent for writing lyrics and songs; he had a way of making people laugh, gave his attention to all those he met and made a huge impact on the many who adored him. What many people didn’t know was that Matt had Cystic Fibrosis and sadly Matt died in April 2007, after a three month battle with an infection caused by the disease.
The Matt Scales Music Fund has been set up in his memory by his family and friends to continue Matt's musical legacy and give back to one of his life-long passions. This fund will provide rehearsal space and studio recording time for young bands who would otherwise struggle to fulfill their potential.
The Rock CF Foundation
Thanks again for your support!