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3 LI teens travel to capital to lobby for cystic fibrosis research

Julianna Brogan, 15, of Bellmore, is one

Julianna Brogan, 15, of Bellmore, is one of three Long Island teens travelling to Washington D.C. June 22, 2016, as part of The Cystic Fibrosis Foundation's eighth annual Teen Advocacy Day. Youths nationwide will meet with lawmakers to call for more funding for research and treatment for cystic fibrosis. Credit: Courtesy Brogan Family

For Max Genova, 14, his cousin, Julianna Brogan, 15, and Stephanie Ross, 13, finding a cure for a sick loved one is a mission worth going the distance.

Coming together from different corners of Long Island, the three teens traveled hundreds of miles to Washington Wednesday to speak Thursday with politicians on Capitol Hill about the importance of providing additional resources for cystic fibrosis research, care and treatment.

The Long Island youths will join 75 teens from around the nation as part of the nonprofit Cystic Fibrosis Foundation’s eighth annual Teen Advocacy Day, when they will speak with lawmakers about their loved ones’ struggles and call for more funding for illness research.

One in every 3,500 people in the U.S. is born with cystic fibrosis, according to the World Health Organization. The foundation supports and accredits more than 120 care and treatment centers nationwide.

For Max, who will be a freshman at Garden City High School this fall, and Julianna, a sophomore at Mepham High School in Bellmore, the illness hits close to home. The two will speak to lawmakers on behalf of Jake Genova, Max’s older brother and Julianna’s cousin.

Diagnosed when he was 2 with cystic fibrosis, a genetic disorder that can lead to fatal lung infections, family members said Jake, now 17, has to undertake a rigorous regimen of medications and therapy for several hours each day just to be able to breathe properly.

The costs for Jake’s treatments range between $5,000 to $10,000 per month, said his mother Danielle, 48, of Garden City.

For Max, a lifetime of watching his brother’s struggle is what motivated him to seek Washington’s help in funding a cure.

“Seeing what my brother does each day, how he has to balance it each day, I have to witness it firsthand,” he said. “It would be great to get government funding so there can be a cure for him someday.”

Julianna said it was also hard for her to see her beloved cousin, who she would go on vacations and spend holidays with since they were children, struggle with his illness.

“It hurts me to see how it he struggles with this,” she said, adding, “If he didn’t have the vest and the treatments, it would be so hard for him to breathe. He literally could not breathe without the materials he has.”

Despite being nervous about the trip, the teens all expressed excitement about not only visiting the nation’s capital — a first for some of them — but also being able to help make a difference in bringing attention to the cause.

“I’m hoping that after the first meeting, I’ll be less nervous,” said Ross, an eighth-grader at Henry L. Stimson Middle School in Huntington Station, who will speak on behalf of her older brother Christopher, 18. Her brother was diagnosed with cystic fibrosis at age 2.

For advice on speaking to lawmakers, Stephanie turned to her older brother Chris, 21, who was in the program five years ago. His advice to her? “Have fun, be confident, just be myself,” she said.

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