Emily’s Story

On Jan. 9, 1985, at the ripe hour of 10:17 p.m., Emily made her debut in the world. She had jet-black hair, porcelain skin, and a dimple in her chin.

Her parents were exuberant and stunned that they had created such a beautiful, perfect baby.

Six short weeks later, their world was shattered when their sweet Emily was diagnosed with cystic fibrosis (CF), a progressive and fatal genetic disease that primarily affects the lungs and digestive system. After the fear, sadness, and complete shock of the diagnosis sank in, Emily’s parents were determined to make her life joyous and fulfilling while ensuring she received optimal medical care.

Their success is evident. Now in her thirties, Emily is smart, passionate, and doggedly determined. She received a bachelor’s degree in communications and a master’s degree in bioethics from the University of Pennsylvania. Before having to step away due to her progressing disease, Emily worked in digital health research at the Penn Social Media and Health Innovation Lab. She now devotes her days to Emily’s Entourage and managing her health.

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. Emily gets no breaks. No vacations. No days off.

Despite facing advanced-stage disease, Emily’s energy is infectious and her Entourage is taking the world by storm. She was named a Champion of Change for President Obama’s Precision Medicine Initiative in 2015 and is the recipient of the 2020 Philadelphia Magazine Luminary Award and the 2016 Global Genes Rare Champion of Hope for Advocacy Award. Her story has been featured by the New York Times, STAT, CNN, Yahoo, AOL, People, The Philadelphia Inquirer, and more, where she has been called, “defiantly optimistic and intensely motivated.”

It is with unflappable perseverance, energy, and courage that Emily fights for each day with a glimmer of hope in her eye and an insatiable desire for tomorrow.

“Change starts with allowing yourself to remain open and vulnerable enough to see something in the world that feels wrong and believe that you could be part of the change.” – Emily Kramer-Golinkoff