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Before you started CFSF, did you have any background in the not-for-profit world? Wasn't starting your own foundation daunting?
I had worked in the corporate world for 25 years and, as part of my responsibilities as Director of Human Resources, I was president of the Brunswick Foundation, which ran a scholarship program for its employees. So, I had some experience in the scholarship area and had worked enough as a volunteer to understand fund raising. By background, I am also a CPA so I had the financial background to take this on.
That sounds good. I don't know much about cystic fibrosis and I'm willing to bet that many of my readers don't, either. Could you tell us a little about this disease?
CF is a genetic disease. Each parent must be a unknowing carrier of the disease. It is a recessive gene so in order to have the disease you have to get the gene from both parents. When both parents have the gene, there is a one in four chance that their child will have the disease. The basic defect involves the movement of chloride in the cells. This does not function properly which causes all the mucus in the body to be very thick. This results in lung disease and digestive problems. They are not able to digest food so they must take enzymes every time they eat. Many of them also then develop CF-related diabetes. The effect on the lungs is what impacts life expectancy.
When did you find out that your son had CF? Was it something you noticed right away?
He was diagnosed when he was three months old. He had pneumonia a couple of times and he was not gaining weight. The first test the doctor ordered was the sweat test which is used to diagnose the disease. Because of the chloride problem, people with CF have very salty skin and this is how it is determined that you have CF. As an aside, there is an old German wives' tale that says, kiss your baby and if he is salty, he will have a short life. So although they did not know what was wrong over the years, they had made that connection.
That must have been a shocker. Did you know anything about the disease?
No, we knew nothing because it had not shown up in our families. We had to learn very quickly.
Did you already have other children at the time?
No, Eric was our first Two years later, we had a daughter who does not have CF.
I'm sure you were anxious about that. What is Eric up to these days?
Eric is now teaching a couple of courses at Oakton Community College in the philosophy department. He had been pursuing a PhD in philosophy but has now decided to pursue studies in economics. He has a Masters so he can teach while he is taking some undergraduate courses in econ to make sure this is what he wants to do. He would really like to work in a think tank.
Wow. It doesn't sound like CF succeeded in holding Eric back. A man of purpose and dreams. How common is cystic fibrosis in the States?
One in twenty people are actually carriers of the gene and one of every 1600 births have CF. There are about 30,000 people in the US with CF but as life expectancy continues to increase, we may see this go up. This is offset by genetic testing on embryos and possible abortions of CF fetuses.
What kind of limitations does CF put on those who have it? Would I know if I passed someone with CF on the street?
Depending on the stage and severity of their disease, they may have physical limitations due to the reduced lung capacity although their are those who participate in sports. Eric used to love to snow ski but he can not do this anymore due to altitude. The only visible signs of CF are an increased cough as they try to get the thick mucus up from their lungs. And many of them are thin. You would not walk past someone and say, "Oh, that person has CF."
