May 15, 2012
When Tulane junior Coby Kramer-Golinkoff takes to the tennis courts he fights hard against his opponent striving for a victory. When the tennis matches are over, his fight is not, as he faces another opponent, this time battling for the life of his sister, Emily. In this fight, his adversary and that of tens of thousands across the country: cystic fibrosis.
Cystic fibrosis is a genetic disorder that is usually diagnosed within infancy with 30,000 recorded cases in the United States. Cystic Fibrosis causes mucus to build up in the lungs making breathing often difficult and allowing for serious infections. Someone who suffers from the disease expected to live only into their mid-30s, an age Emily is rapidly approaching.
Kramer-Golikoff describes his sister's life as an "inspiration to everyone that knows her." At 27-years old, she has accomplished more than many people her age. According to Kramer-Golinkoff, Emily graduated from the University of Pennsylvania and is now striving for her master's degree in bioethics, and works for the University in the marketing programs of their healthcare system. Yet, she still deals with the reality of her illness.
"She does three to four hours of treatment a day," reports Kramer-Golinkoff. "In her college career, she's been in the hospital over 10 times. Her lung function is just rapidly diminishing."
In December 2011, Kramer-Golinkoff joined forces with family and close friends using his existing talents to get out their important message, a project he coined as "Emily's Entourage."
"I've always enjoyed making videos," he explains. "Last summer as a family project, I put together a video talking about my sister's daily struggles and how amazing she is despite the obstacles she faces in her life. We launched it and were just blown away by the positive response."
The video asks people to share the message within their social circles and for those who can, to donate any amount of time and money to the cause. Kramer-Golinkoff explains that the goal of Emily's Entourage is "To reach the most people, to raise the most awareness, and raise as much money as possible. We donate all the money to the Cystic Fibrosis Foundation for research for a cure."
Bringing in over $90,000 dollars in their first month, it's fair to say Emily's Entourage has been a success.
And the success didn't stop there for Emily's Entourage. Kramer-Golinkoff and his family were honored in their hometown of Philadelphia at an Eagles' NFL game, as well as a Flyers' NHL game. As an athlete, Kramer-Golinkoff understands the value and media attention sports can put on an issue as important as the one he is fighting.
Projects like this gain most of their support locally which is why as leader of the project, Kramer-Golinkoff focuses most of its efforts on Tulane's campus.
"Tulane is a school that emphasizes the importance of giving back," he stresses. "Students at Tulane have such great potential to make a difference in the lives of people who need it. It's about mobilizing our student body to spread an important message and create change on a large scale."
This idea was the basis for one of the projects most important ventures to date. Emily's Entourage hosted a party at one of Tulane's local hangouts: the Frat-House Uptown. In the weeks leading up to the event, Kramer-Golinkoff, as well as numerous volunteers, posted a table outside of the Lavin-Bernick Center where they sold Emily's Entourage tank tops in purple and white (their official colors) that acted as tickets for admission to the party. The tank tops were sold at a minimum of $10 or however much a supporter wanted to spend. The night of Tuesday, April 10th was the official party date, and the overwhelming support encouraged Kramer-Golinkoff in what he was doing.
"Our fundraising party was to kick-off what we hope will be a yearly sustainable Emily's Entourage benefit event," explains Kramer-Golinkoff. "We were shocked by the way the Tulane community embraced our efforts and ended up raising over $13,000. In addition, we sold over 1,000 Emily's Entourage tank tops. This means that one in seven Tulane students has an Emily's Entourage tank top and is `in the Entourage.'"
With all of Kramer-Golinkoff's success, there are more responsibilities. "This feels like full time job while being a student and a tennis player. I've definitely been drinking much more coffee this semester," he jokes. "It's a lot harder for me to manage my schoolwork when I've got all these possible things to do for Emily's Entourage and that's really what I enjoy doing"
But nothing can stop a brother's fight to save the life of his sister. "I'm so passionate about this and it is a pleasure for me to do. It's more of a hobby for me. It's what drives me."
Tulane's men's tennis head coach, Mark Booras, supports everything that Kramer-Golinkoff has done. "I'm proud of him. We think it's great for the Tulane tennis team that we have a guy like Coby who's able to branch out and do things beyond academics and athletics, give back to his community, and try to do things for the better good for people with this illness."
As of now, there is no cure for Cystic Fibrosis which is a fact that Kramer-Golinkoff is doing all he can to change.
"In January, [the Cystic Fibrosis Foundation] came out with a revolutionary new drug called Kalydeco," declares Kramer-Golinkoff. "It's able to address the cause of the disease as opposed to the symptoms. Unfortunately, it only affects four percent of the people with CF which is not my sister. But its proof of the concept and it gives us more hope to keep pushing and to fund this life saving research."
For more information or to make a donation Emily's Entourage visit http://emilysentourage.org/