Emily’s Entourage

Emily's Entourage Giving Page

About Emily’s Entourage:

Emily’s Entourage is a tax-exempt organization that raises funds and awareness to help cure Cystic Fibrosis (CF). It was founded to accelerate the pace of research for everyone with CF with a focus on rare nonsense genetic mutations. We’re mobilizing friends, families and communities to join Emily’s Entourage on our quest for new treatments and a cure.

¬†Emily’s Story:

Emily currently faces advanced-stage CF and CF-related diabetes. She spends over three hours each day on treatments to salvage lung function and prolog end-stage treatments like lung transplant. But Emily is defined by much more than CF. She’s a founder of Emily’s Entourage, works in digital health research and innovation at Penn Medicine, and holds a master’s degree in bioethics. With determination, unflappable perseverance and courage, Emily fights for each day with a glimmer of hope in her eye and an insatiable desire for tomorrow.

 What is Cystic Fibrosis?

Cystic Fibrosis (CF) is a progressive genetic disease that affects the lungs and digestive system as well as a variety of other organs systems. It causes thick, sticky mucus to build up in the lungs, which leads to life-threatening lung infections. There are approximately 30,000 people with CF int he United States and 70.000 worldwide.

CF Statistics:

  • Projected life expectancy is 41 years
  • Approximately 1,000 people are diagnosed with CF each year
  • Nearly half of the current CF population is 18 years or older
  • Over 1,900 mutations of the CF gene have been identified

Stay Connected:

Connect with us on social media for updates, information and conversation!
Facebook: http://facebook.com/emilysentourage
Instagram: http://instagram.com/emilysentourage
Twitter: http://twitter.com/emsentourage4cf

Help support and learn more about Emily’s Entourage at www.EmilysEntourage.org.