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.
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
Emily’s story has been featured on People.com, Time.com, CBS’s nationally syndicated television program The Doctor’s, The Philadelphia Inquirer and more, where she has been called “defiantly optimistic and intensely motivated.”
Beth Lavin and Julie Wetheimer
Guests write down inspirational sayings on the wall
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.
Barbara Berley- Mellits, Joan Denenberg, Corri Bernstein
Mariann Boston, Nickie Boston and Desie Boston who produced the event and executed the theme of the party.
Bob and Marta Adelson
Heather Burkman and Zack Schildhorn
David Kramer, Franci Kramer, Danielle Barson and Louis Barson
Michael and Bonnie Silverberg
Linda Yoo and Chip Schubert
Cheryl Jones, Charlene Locke, Madison Gale-Laman, and Esha Mehta
Helen DeHaven, Norma Michaels, Hope Cohen and Nickie Boston