Two Barrington sisters used their time away from school this summer furthering a cause that aims to save lives lost to cystic fibrosis.
Natalie and Hayley Gray, both Barrington High School students, traveled to Washington, D.C. to participate in Teen Advocacy Day on behalf of the Cystic Fibrosis Foundation. Sixty other teens from across the country joined the Gray sisters in an attempt to press elected officials to support drug research and development.
“The most important part is to share our story about how cystic fibrosis has touched our lives,” Hayley Gray said.
Natalie and Hayley’s older sister, Lauren Gray Munao, a 2002 Barrington High School graduate, died in 2009 at the age of 26 from complications caused by cystic fibrosis.
“We like doing positive things so kids with cystic fibrosis have hope,” said Hayley Gray. “Sharing our story with representatives is very helpful.”
The recent effort had them advocating for more funding and promoting access to cystic fibrosis care centers, facilities that help children and adults who suffer from the disease. More than 1,000 people in Illinois suffer from cystic fibrosis, according to the Cystic Fibrosis Foundation, a nonprofit that aims to treat and eventually put an end to the disease.
“We had a day where we met with the house and senate,” said Hayley Gray. “We met with representatives and we were fortunate enough to have a face-to-face meeting with (Sen.) Dick Durbin. Everyone was very interested in our story.”
Cystic fibrosis, which is caused by a gene that produces unusually thick mucus, often leads to lung infections and digestive problems.
Natalie Gray explained that although cystic fibrosis affects about 30,000 Americans, many additional people may be carrying the gene.
“An interesting fact is that there are probably 10 million people in the U.S. who carry a defective gene,” she said. “So even though our population is very small, a lot of people carry the gene. They just don’t know it.”
In past years, many children born with cystic fibrosis did not live past 5 years old. With new research, including a new drug called Kalydeco, patients have been beating past outcomes.
“There’s so much hope right now. It’s really an exciting time for the CF community,” said Hayley Gray. “We generally received support, but it’s a difficult time in Washington.”
In Washington, Hayley and Natalie also met with staff members from the offices of Sen. Mark Kirk and U.S. representatives Tammy Duckworth, Peter Roskam, Bobby Rush, Bill Enyart and Daniel Lipinski, all from Illinois.
Natalie and Hayley also regularly participate in many other cystic fibrosis advocacy events, such as the Barrington Great Strides Walk and 5K and the upcoming Cycle for Life on Sept. 7 in Geneva.
“I love the athletic challenge of it,” said Hayley Gray about the Cycle for Life, which is hosted in dozens of cities benefiting the Cystic Fibrosis Foundation.
The Gray sisters said they also plan to travel to Washington, D.C. again next summer for Teen Advocacy Day in honor of their sister.