FAQs

CYSTIC FIBROSIS (CF)

What is CF?
CF is a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes bacteria to get stuck in the airways, which causes inflammation and infections that lead to lung damage. Mucus also can block the digestive tract and pancreas. The mucus stops digestive enzymes from getting to the intestines. The body needs these enzymes to break down food, which provides important nutrients to help people grow and stay healthy. People with CF often need to replace these enzymes with medicine they take with their meals and snacks, which helps them digest food and get proper nutrition. The current expected lifespan of someone born with CF is 37 years.

How do people get CF?
CF is a genetic disease.
A person must inherit two copies of the defective CF gene (one copy from each parent). If both parents are carriers of the CF gene, their child will have a 25% chance of inheriting both defective copies and having cystic fibrosis, a 50% chance of inheriting one defective copy and being a carrier, and a 25% chance of not having CF or carrying the gene.

Who gets CF?
Approximately 30,000 children and adults in the United States have cystic fibrosis. An additional ten million more (about one in every 31 Americans) are carriers of the defective CF gene, but do not have the disease. CF is most common in Caucasians, but it can affect all races.


Are there different kinds of CF?
Not every case of cystic fibrosis is the same. A person’s mutation (there are over 1,000) determines what goes wrong on a cellular level, and which therapies may work to correct it. The CF gene makes a protein called the Cystic Fibrosis Transmembrane conductance Regulator (CFTR). The protein is a chloride channel. Chloride, a charged particle in cells, flows out of the cell through the center of the channel and water follows behind it. The water keeps mucus thin so it can move out of the lungs. In healthy people, CFTR is located on the surface of cells lining the lungs and other organs. People with CF have little or no CFTR, depending on what class their mutation falls into.



CHARITIES

Is Carson's Crew an official non-profit charity organization?
Not directly - Carson's Crew is a group of our family and friends who participate in a variety of fundraising activities throughout the year. Most events we participate in are held by the 501(c)3 non-profit Cystic Fibrosis Foundation, and 100% of any proceeds we raise on our own are transferred to CF Foundation.

What is the CF Foundation?
Their mission statement is: We are a nonprofit donor-supported organization dedicated to attacking cystic fibrosis from every angle. Our focus is to support the development of new drugs to fight the disease, improve the quality of life for those with CF, and ultimately to find a cure.

Why do we support the CF Foundation?

The CF Foundation supports and accredits 115 care centers nationwide (including Carson's hospital) where people with CF can receive expert care and access resources. Finding new medicines to fight CF and ultimately a cure is the driving force behind the CF Foundation. They aggressively invest in drug development research with the most successful and innovative biotech companies and scientists in the world. Over 30 drugs in the development pipeline (including 3 Carson uses) is proof their efforts are working!

I've heard of the Boomer Esiason Foundation, why don't you support them?
Besides being a childhood sports hero of Shaun's, we certainly appreciate the work Boomer has done for the CF community. The CF wing in Carson's hospital was named after Boomer's son Gunnar. Boomer started his foundation after his son was diagnosed and they are primarily focused on education and support of those dealing with the disease as well as finding a cure. We have chosen to support the CF Foundation who have a greater focus and means to provide funds to research a cure.



CARSON

What mutation of CF does Carson have?
Carson has a double copy of the Delta F508 mutation which is found in about 90% of the CF population. It's a class II mutation, meaning the CFTR protein doesn't get to the cellular wall to allow for chloride transfer which causes the thick, sticky mucus through organ passageways. We're hoping the current clinical trial of Kalydeco & VX-809 is successful in correcting this defect and proves to be a cure!

Can Carson do everything kids without CF can?
Yes! Other than his treatment and extra awareness for sickness, he can participate in anything all other kids his age do. Physical activity is encouraged since it can help break up any mucus in his lungs. Luckily, two of Carson's favorite things are jumping on his trampoline and chasing Alison and Shaun around the house.

Why does Carson seem so healthy having CF?
Carson was diagnosed with CF shortly after birth with results of the newborn screening test. We were able to begin treatment immediately which included digestive enzymes and vitamin supplements to help with nutrition and airway clearance therapies to help with his lungs. While we had some set-backs the first year (CF related and not), Carson has been extremely healthy since and his positive personality appears to be one of a fighter. We believe due to care and guidance from his clinic visits, positive reinforcement from our support base, and full adherence to treatment, Carson will continue to be healthy for a long time to come. However, because this is a progressive disease, we remain committed to finding a cure before any lasting damage can occur.