Philadelphia

Emily and her Entourage Battle Cystic Fibrosis (CF) in Philly

Emily has Cystic Fibrosis (CF), a progressive and fatal genetic disease that primarily affects the lungs and digestive system. Each day, Emily spends countless hours on breathing treatments, injects multiple shots for CF-related diabetes and takes over 30 pills in an effort to salvage every ounce of lung function and delay end-stage CF for as long as possible. Still, not even her most valiant efforts can halt the inevitable progression of this cruel, insidious disease. And she is not alone. Each year, approximately 1,000 people are diagnosed with CF.  Nearly half (over 45%) of the current CF population is 18 years or older and there are over 1,900 known CF mutations making it incredibly hard to treat.

 

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Liza Kramer, Coby Kramer-Golinkoff, Annie Kramer-Golinkoff, Julia  Kramer-Golinkoff, Emily  Kramer-Golinkoff, and Michael Golinkoff

Despite facing advanced stage disease, Emily’s energy is infectious and her Entourage is taking the world by storm. In July, 2015, the White House named Emily a Champion of Change for Precision Medicine.

Emily’s Entourage took place on December 3 to Help Find a Cure for Nearly 70,000 People Living with Cystic Fibrosis Worldwide. The event was held  Moulin at Sherman Mills

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Emily’s story has been featured on People.comTime.com, CBS’s nationally syndicated television program The Doctor’sThe Philadelphia Inquirer and more, where she has been called “defiantly optimistic and intensely motivated.” Emily
Beth Lavin and Julie Wetheimer

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Guests write down inspirational sayings on the wall

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There was an extensive silent auction to raise additional funds. The organizers tell me they raised over $400,000 at the event and raised over $35,000 in just the 7 minute donation countdown alone.

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Barbara Berley- Mellits, Joan Denenberg, Corri Bernstein

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Mariann Boston, Nickie Boston and Desie Boston who produced the event and executed the theme of the party.

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Bob and Marta Adelson

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Heather Burkman and Zack Schildhorn

 

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David Kramer, Franci Kramer, Danielle Barson and Louis Barson

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Michael and Bonnie Silverberg

 

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Linda Yoo and Chip Schubert

 

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Cheryl Jones, Charlene Locke, Madison Gale-Laman, and Esha Mehta

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Helen DeHaven, Norma Michaels, Hope Cohen and Nickie Boston

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