Vanessa Hammond said 30,000 people in the United States suffer from something about which the majority of its citizens know nothing.
Hammond, co-chair of the Great Strides walk and director of grants at Lee University, was the featured speaker at the most recent meeting of the Bradley Sunrise Rotary Club.
She said one of her sons had been diagnosed with cystic fibrosis and stressed the need for awareness of it.
“Most people don’t know because it’s not a common disease,” Hammond said.
Cystic fibrosis, a genetic disease that is often referred to as CF, affects the amount of mucus a person’s body produces. The body produces thick mucus that can clog organs and lead to problems like frequent lung infections and malnutrition, said Hammond.
She works with the Great Strides walk event each year to raise money for the Cystic Fibrosis Foundation, which works to further research of the disease.
A cure for CF has not been found yet, but patients have been living longer and longer.
Hammond said the average amount of time a person would be expected to live in 1950 was one year. Now, she said, the average lifespan of someone with the disease has increased to 37 years.
“Thirty-seven is still much too young, but there’s so much progress,” she said.
Hammond explained that newborn screenings for the disease now occur in all 50 states, and treatment centers for adults with the disease are being started for the first time because people are living longer.
The Food and Drug Administration has so far approved a new drug called Kalydeco, which can treat CF in patients with certain types of the genetic disease.
Hammond said her 15-year-old son, Will, had been taking Kalydeco as part of a trial and had seen positive results, to the point that a test normally used to determine if a person has CF came back with a negative result.
“He breathes deeply,” she said. “It completely took back the evidence of this disease.”
However, she said more scientific advances are needed since the drug can only be used by 4 percent of all CF patients because of the various genetic types of the disease.
She said the Great Strides walk and 65 Roses 5k will take place at Lee University on April 13 and encouraged all club members to attend.
The Bradley Sunrise Rotary Club is a community service club that meets Thursday mornings at SkyRidge Medical Center.