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Emily's Entourage and the Fight Against Cystic Fibrosis

November 28, 2016

This week, we are partnering with Emily’s Entourage, an organization started by Emily Kramer-Golinkoff to raise awareness and funds for Cystic Fibrosis research.  Until December 3rd, we will be giving 10% of proceeds from our Violet covers to Emily’s Entourage.  The story behind this incredible organization is an inspiring one of hope, endurance, and the strength of grassroots organizations in achieving real change.

 Emily Kramer-Golinkoff is 31, already getting close to the life expectancy for people living with Cystic Fibrosis.  The disease is genetic and fatal, and affects 30,000 people in the United States and 70,000 worldwide.  The disease causes persistent lung infections and gradually reduces the ability to breathe over time.  A thick buildup of mucus occurs in the lungs, pancreas, and other organs, which clogs airways and can lead to infection by trapping dangerous bacteria in the lungs.  Over time, this causes lung damage and respiratory failure, and mucus in the pancreas can inhibit the body’s ability to absorb vital nutrients. Both Emily’s parents carry an Ashkenazi mutation, a genetic mutation which causes the disease. 

 Five years ago, Emily’s family decided to do something to help not only Emily, but the tens of thousands of others with Cystic Fibrosis worldwide.  They started Emily’s Entourage, a nonprofit organization that used Emily’s story to fuel fundraising efforts to improve and accelerate Cystic Fibrosis research.  It began with one video, made by Emily’s brother and sent to family and friends, with a request to donate and share her story.  The video campaign made $45,000 in one week and Emily’s Entourage has now taken in over $2 million in donations.  The organization, run by Emily and her mother Liza, organizes fundraising events and accepts online donations. 

Since the formation of Emily’s Entourage, Emily has become a spokeswoman for Cystic Fibrosis awareness and research.  She’s lectured at a medical conference at Stanford University, been honored at the White House, given a TED Talk, and been featured in magazines like People and on television.  Her focus is accelerating research on genetic defects, like the Ashkenazi mutation, that cause many diseases and disorders.  Emily’s Entourage has helped fund research on genetic mutations at McGill University, The Hospital for Sick Children in Toronto, the University of Alabama at Birmingham, and The University of California San Francisco.  Emily has also donated her own cells to research studies and is currently the only patient enrolled in a trial at the University of Alabama at Birmingham.   Although Emily worries that a breakthrough won’t come in time to help her, the work she is doing could be critical in helping people with Cystic Fibrosis in the future. 

At 31, Emily is down to 35% lung capacity, but she is seemingly unstoppable.  A cum laude graduate of the University of Pennsylvania, Emily has a master’s in bioethics and is tireless in her work with Emily’s Entourage.  She travels frequently, walks 10,000 steps per day, and is constantly on the phone or meeting with people to garner support for her cause.  Cystic Fibrosis may cause her to have to take extra precautions to avoid bacteria, go through three different procedures daily to combat the disease, take 30 daily pills, and inject herself with insulin four times per day, but she doesn’t let it slow her down.  Emily is the driving force behind Emily’s Entourage, and her strength and persistence makes it easy to see how the organization has risen to such prominence in the fight against Cystic Fibrosis.

 We are giving 10% of sales of our Violet PICC line covers to Emily’s Entourage all week until December 3rd and are proud to show our support for their work.  If you’d like to learn more about Emily and Emily’s Entourage, visit them online at www.emilysentourage.org



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