Alex Aken’s love for his sister led him to Washington, D.C., for the Cystic Fibrosis Foundation’s Annual Teen Advocacy Day.
Alex Aken, a rising senior at Olympia High School, grew up close to his sister Ashley Aken, a rising sophomore at the University of Central Florida. Ashley Aken was born with cystic fibrosis, a disease that affects the lungs and the digestive system, limiting one’s ability to breathe.
“My sister, she’s absolutely amazing because she doesn’t use her disease as a crutch, as an excuse for her to not do certain things, but rather, she’s someone who tries to overcome that and put that aside,” Alex Aken said. “But as a brother, I can sometimes see past that and see the struggle that she’s going through.”
On June 23, Alex Aken headed the to the U.S. Capitol building with other teenagers who wished to advocate on behalf of cystic fibrosis patients. He was paired with a teenager from Naples, and together they met with five legislative assistants of members of Congress.
They shared their personal stories of seeing loved ones with cystic fibrosis. They sought to bring awareness of cystic fibrosis to the national level. Next, they asked Congress members to join the Cystic Fibrosis Caucus, which works to raise awareness about the disease as well as support research and policies that will help people with cystic fibrosis.
Finally, they asked for funding for the National Institutes of Health and the Food and Drug Administration, because those organizations work closely with the Cystic Fibrosis Foundation and perform crucial roles in getting medications passed for people with cystic fibrosis.
“I think the biggest thing for me was being a teenager — or honestly just a citizen who’s not involved with the government — you would expect going in there that they got a thousand other things on their minds, but when you sat down with each Congress member, they actually listened to us,” Alex Aken said. “And when we told our personal testimonies of how we are involved with cystic fibrosis and how it affects our lives and the people that we love, they actually listened and wanted to know how they could help. That’s just really great to know that the people who are leading our country really do care about the people that they’re leading.”
Ultimately, Alex Aken wants people to become more aware of the disease so that better medications can be found.
More than 30,000 people in the U.S. live with cystic fibrosis. That number is high, but cystic fibrosis often doesn’t get the attention and care for research that more common diseases receive. But Alex Aken has seen firsthand how the disease can affect someone.
Both Alex and Ashley Aken are passionate about the game of lacrosse. Since elementary school, the two would go outside and play lacrosse together. If Ashley ever ran hard for several seconds, she would have a coughing attack and need to go inside to catch her breath. There were days when she couldn’t go to school because of difficulties breathing. Alex Aken also remembers seeing her, as captain of the varsity girls lacrosse team at Olympia High, curled up in a blanket on the sideline, trying to catch her breath, rather than being out on the field playing the game she loved.
Every day, she has to take multiple medications and use a breathing machine. But ultimately, Alex Aken has a positive outlook on the future of care for cystic fibrosis patients.
“In 1955 when the Cystic Fibrosis Foundation was started, they started with nothing,” Alex Aken said. “There were no treatments; there wasn’t any medicine. All (of a) sudden we come to today, where there isn’t necessarily a cure … but there are new treatments.”
After 60 years, cystic fibrosis patients and their families now have hope.
Contact Jennifer Nesslar at [email protected].