Aubrie's CF Benefit Events, Inc.

Aubrie's CF Benefit Events, Inc. organizes events to raise money to assist local families affected by Cystic Fibrosis. In working closely with Children's Hospital of Philadelphia (CHOP), and the University of Pennsylvania (UPenn) we identify needs of CF patients who otherwise might not have any other resource for help. 100% of all proceeds go directly to local families in need.

How is a person affected by Cystic Fibrosis?

Cystic Fibrosis (CF) manifests itself in two major bodily systems: the respiratory system and the digestive system. In the respiratory system, CF mainly affects the lungs. In the digestive system, CF affects the body’s ability to absorb nutrients. Because of a defect in the sodium chloride channels, the mucus in a CF patient’s body is abnormally thick and sticky. As a result, frequent coughing is a common symptom of having CF. In the lungs, the thick and sticky mucus is difficult to remove and tends to build up. Often, this provides an ideal environment for bacteria to grow and leads to infection. Coughing is a way of clearing the lungs of the mucus build up, and can help to stave off infections.

The digestive system is also affected by the build up of thick mucus. This mucus blocks the pancreas, which usually secretes digestive enzymes into the body. Because this is blocked, the CF patient is unable to digest food naturally, and must take supplemental digestive enzymes along with every meal. Unfortunately, not all the fat and calories taken in are digested, so it is not uncommon for a CF patient to be thin.

Being progressive, CF worsens as the patient ages. In some, problems start at a very young age. In others, a healthy life can be lived for a long time. There are many new treatments and therapies available to prolong the life of a person with CF. If utilized correctly, a long and fulfilling life is possible.

After living with CF for some time, it may become necessary for a patient to consider a lung transplant. There are two types of lung transplant options available, and many factors influence which may be the best option for a particular individual.

1. Cadaver Transplant – A cadaver transplant involves the harvesting of lungs from an individual who has recently passed away. In order to receive a cadaver transplant, one must be listed on a transplant waiting list. The current wait for lung transplant from a cadaver is approximately two years.

2. Living Lober Transplant – a living lober transplant requires two live individuals who are each willing to donate a portion, or a lobe, of their lung. One person would donate a lower right lobe, and the other the lower left. This surgery is fairly new. It has many positives for the CF patient, two of which are: it can take place at a scheduled time, and it involves living tissue.

CF affects 1 in every 2,500 babies born.
1 in 25 people carry the CF gene. (approximately 7 million people in the United States)
CF is the most commonly inherited life-shortening disease.
The average survival age is approximately 35 years.
CF occurs most frequently in Caucasians.

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