Friday, Apr 18, 2014 07:21 am est

NYU group Emily’s Entourage bands together to fight cystic fibrosis

Posted on February 11, 2013 | by Jonathan Keshishoglou

Courtesy of Emily’s Entourage

 

Emily Kramer-Golinkoff has been battling cystic fibrosis for 28 years — her entire life.

The disease, which causes mucus to buildup and clog the lungs and other tubes in the body, is often fatal. The NYU chapter of Emily’s Entourage, a new student group brought to NYU by Stern freshman Phil Hayes, seeks to fight this incurable disease.

The original chapter of Emily’s Entourage, whose founders include several members of the Kramer-Golinkoff family, began in the suburbs of Philadelphia over a year ago. Their goal was to raise money and awareness to help find a cure for cystic fibrosis. Since then, the group has established a strong foothold in Tulane University and has expanded to the University of Michigan, Arizona State University, the University of Delaware and now, NYU.

“I noticed a gap [at NYU] … there was no charity for cystic fibrosis,” Hayes said. “There are drugs in the market that are shown to significantly increase life expectancy. But there’s not enough funding, so we’re here to help find a tangible outcome.”

Hayes first joined the group last summer through Coby Kramer-Golinkoff, Emily’s brother and a student at Tulane University. After seeing Coby and his sisters give a TEDx talk on youth activism, he reached out to them to help facilitate the expansion of their organization to other college campuses, including NYU.

Currently, the NYU chapter has big plans for the coming months. They hope to partner with Greek life on campus to throw parties and host other fun events to raise awareness for Emily’s Entourage. They are also working to establish a strong online presence on Twitter and Facebook.

“Emily’s Entourage is not only about filling a gap in curing cystic fibrosis, but doing so in a way appropriate to its audience,” Hayes said. “We want to plan events that people like to attend.”

Emily graduated from the University of Pennsylvania and has since returned to pursue a master’s degree in bioethics. She and her family are all active members of the group. Her brother Coby is responsible for making the group one of the most prominent organizations at his school.

“The breakthroughs that have come out this year have been staggering and life-changing for a portion of the cystic fibrosis community,” Coby said. “It’s been a very promising year but we definitely need more breakthrough drugs for my sister and the 70,000 others [worldwide] with CF. Our mission will not be fulfilled until everyone with cystic fibrosis can take a deep breath.”

Jonathan Keshishoglou is a staff writer. Email him at features@nyunews.com

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Tatiana Baez

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