Janet Weiner’s daughter Melissa seemed perfect at birth. With a 2 ½-year-old boy at home, things seemed to be going great. But 14 weeks later, Weiner and her family took Melissa to a friend’s christening and realized their 8-pound daughter looked like the newborns. After a series of tests, they learned Melissa had cystic fibrosis-and so did her seemingly healthy brother, Matthew.
Cystic fibrosis 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. About 30,000 people in the United States have CF, but many more like Weiner and her husband are carriers of the defective gene who are unaware of any CF in their family history.
“I can’t even begin to tell you the heartache,” said Weiner, an attorney at the Environmental Protection Agency and the agency’s CFCNCA Campaign Manager. “You have these dreams for your kids…At the time they were diagnosed, the expected age of survival was about 20 years old. That was the average, so half the kids didn’t live that long. That was really scary to us.”
With the help of CFC-supported organizations, “the pace of scientific research has been like a rock rolling down a hill. It just gives me so much hope that we will have a perfectly normal lifetime for both of them,” Weiner said.
When Weiner heard EPA was looking for a CFCNCA Campaign Manager, “I put my hat in the ring, mostly because I honestly felt that I’ve had so much benefit from CFC charities in my own family that it would be a good way to give back.”
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