What is Cystic Fibrosis
Cystic fibrosis, or CF, is a genetic disorder that causes severe lung damage and nutritional deficiencies in approximately 30,000 kids and young adults nationwide. Currently there is no cure. A defective gene alters a protein that regulates the transference of sodium chloride through cell walls. People with CF must have their lungs constantly cleared out to reduce the chances of infection and other life-threatening complications resulting from the build up of mucus. These same secretions often block the pancreas, and digestive enzymes must be added to the diet to prevent malnutrition. Some patients develop diabetes; liver and fertility problems can also occur.
Until about ten years ago, people with CF rarely lived past their teens, and many led very restricted and isolated lives; they were malnourished, suffered infections and pulmonary problems and often died from lung disease and respiratory failure. In 1989, scientists discovered the gene that causes CF, which has led to better treatments and greatly accelerated gene therapy research. Now, many people are living into their thirties and some even beyond that.
Who is Trevor?
On July 13, 1999 Trevor was diagnosed with cystic fibrosis (CF)—he was only five months old at the time. Trevor is now seventeen years old and is an amazing kid. He is a bundle of energy and spirit who makes his family and friends smile all the time.
Because Trevor has CF he has a medical routine that is oftentimes challenging. A typical day for Trevor begins with an assortment of medicines to help keep him healthy. These include:
- breathing treatments to open his airways; hypertonic saline, surfing in a medicine
- twenty minutes (twice per day) of chest physical therapy to loosen the mucus that clogs his lungs
- digestive enzymes before food so his body can break down the food and use it
- supplemental vitamins to restore the fat-soluble vitamins that his body doesn’t process effectively
- Azithromycin to act as an anti-inflammatory drug in Trevor’s lungs
- Nexium daily to make the enzymes he eat wait to work until they reach his small intestine
Trevor takes most of this routine in-stride–he manages him time wisely to fit it all in.
After recovering from the shock of Trevor’s diagnosis, his Mom and Dad decided to take action and learn how to become fundraisers for the Cystic Fibrosis Foundation. Trevor’s future resides in the hands of researchers and research doesn’t come cheap. Twenty years ago there was ample research money and very little technology. Today the inverse is true; ample technology exists but it is expensive. Team Trevor was born out of love for Trevor. Our goal is to raise money for the Cystic Fibrosis Foundation to fund research—research that will change the future for people living with CF.
Who is Team Trevor?
Team Trevor is made up of Trevor’s family and friends and all of the good, kind, generous people who recognize the need to change the future for those people affected by cystic fibrosis–specifically those who are being left out of clinical trials because their CF mutation is rare. There are over 1,000 CF mutations that affect 5 or less people. They are called the “ultra rare” CF mutations. Trevor belongs in this group and will be excluded from access to new and developing medicines because one of his CF mutations is extremely rare.