South Forsyth High School junior Kelly Spera recently spoke to elected officials on behalf of those with cystic fibrosis as part of the Cystic Fibrosis Foundation’s eighth annual Teen Advocacy Day.
Spera — whose 13-year-old brother was diagnosed with cystic fibrosis two and a half years ago — met with senators, representatives and congressional staff to advocate for more resources dedicated to cystic fibrosis research, treatment and care.
“TAD was a great experience for me because I learned that I can make a difference and help my brother fight this disease and show him that I’m behind him 100 percent,” Spera said.
The more than 75 teens who attended the advocacy day asked members of Congress to increase funding for the National Institute of Health and the Food and Drug Administration and to consider joining the House Caucus and the Senate Caucus for cystic fibrosis.
Spera spoke about finding a cure for cystic fibrosis and asked representatives to support the two departments. She also shared her personal experience of how the disease impacted her brother.
“I had never heard of CF before my brother’s diagnosis since I was only 13 at the time,” Spera said. “Lots of things changed for him and for our family. When I’m watching him do all of his meds and his vest and nebulizer I think he’s a strong, tough kid, and I’m proud of the way he handles everything.”
The young people at Teen Advocacy Day play an important role in protecting cystic fibrosis funding and act as a mouthpiece for the about 30,000 Americans who are victims of the disease, which causes progressive lung damage and makes breathing difficult.
Although TAD was Spera’s first experience in fighting against cystic fibrosis, she said she does not plan on it being her last.
“I will definitely stay involved and I do plan on doing Teen Advocacy every year,” Spera said. “I also plan on participating in the Great Strides walk in Atlanta or the Cycle for Life in the fall.”