From Teen to Adult Advocate: Oakey Finds His Community and His Voice

Lukas Daskas found something in the Cystic Fibrosis Foundation's Teen Advocacy Day that he had been searching for his whole life: a sense of community and understanding by others who know what it's like watching a loved one battle cystic fibrosis.

| 4 min read
Dora Nagy

When I asked Lukas “Oakey” Daskas what the best part of his first March on the Hill experience was, I fully expected him to say that it was the thrill of getting to meet with members of Congress. Instead, he told me that his favorite part was the dinner that takes place after all the meetings are over, when all the other advocates come together and share their stories from the day. He said, “It's better than Christmas morning. It's a gift for me to hear about how others are making an impact.” This statement momentarily stunned me, and I quickly realized that Oakey is not your average 19-year-old.

Oakey has been a volunteer advocate for the Cystic Fibrosis Foundation since he was 14 years old, when he signed up to participate in the Foundation's Teen Advocacy Day. He never missed an opportunity to travel to Washington, D.C., every year to meet with members of Congress and their staffers and share what life is like for his older sibling, who battles cystic fibrosis.

But it wasn't just getting the opportunity to ask Congressional leaders to support legislation that helps people with CF that kept him coming back year after year. It was the sense of community that he found among the other participants. “I felt a special connection with the other teens because we're in the same fight together,” said Oakey. Coming to D.C. every year was the only time in his life that he was surrounded by peers going through the same thing. Before joining Teen Advocacy Day, Oakey never talked about his sibling's health with others, which felt very isolating to him. Being around the other teens and participating in Teen Advocacy Day was life changing for him.

Oakey with Senator Harry Reid (D-Nev.) during his first (left) and last (right) Teen Advocacy Day in 2011 and 2015, respectively. The 2011 meeting was Oakey’s first-ever meeting on the Hill. He fondly remembers Sen. Reid declining a sudden meeting request from the president to continue listening to Oakey recall stories about his grandfather, who was a childhood friend of Sen. Reid’s.

“Everything that I do in my life now is because of Teen Advocacy Day. It's shaped who my friends are and my outlook on life,” said Oakey. It's even helped determine where he is going to college. This fall, Oakey will begin his studies in journalism at American University, which is a mere four miles from the Foundation's national office where Oakey did his 2015 summer internship and only seven miles from the U.S. Capitol building where he has made his yearly journey for Teen Advocacy Day.

This year, since Oakey is 19 -- and no longer qualifies as a teen advocate -- he graduated to March on the Hill, the Foundation's signature annual advocacy event on Capitol Hill, now in its tenth year. He was the most seasoned advocate in his March on the Hill group this past February. The transition to adult advocate was fairly smooth. Oakey said the one notable difference is that the Teen Advocacy Day meetings are more emotional.

Oakey plans to continue his volunteer advocacy efforts and to remain engaged with the Foundation, particularly with the policy team. Oakey tells me that every year, he comes with a special message for Mary Dwight, the Foundation's senior VP for policy and patient assistance programs: “One day, I better get your job, Mary.”

And Mary has nothing but confidence in Oakey's abilities. “That would be amazing,” she said. “I can't wait to see what the next generation of CF community leaders will do to take the Foundation to even greater heights.”

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Dora previously worked at the Foundation as a writer and editor. During her tenure, she loved to listen to others share their memories and experiences, and consumed storytelling in all of its different forms. She constantly looks for the uniqueness in everyone's story. Dora has a B.A. in communications from the University of Maryland, College Park, and an M.S. in public policy and administration from the London School of Economics. Born in Budapest, Hungary, Dora was raised mainly in the Washington, D.C., metropolitan area where she currently resides today.

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