CYSTIC FIBROSIS RESEARCH FUND
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Mission Statement
Emily's Entourage is a 501(c)3 that raises funds and awareness to help cure CF. Recent breakthroughs are changing the face of CF, but unfortunately they do not benefit many of the rare CF mutations. Founded for a young woman valiantly pursuing life full-speed despite advanced-stage CF, Emily's Entourage leverages the power of communities to accelerate research for new treatments and a cure for CF with a focus on rare (nonsense) mutations. For more information, visit www.EmilysEntourage.org.
About This Cause
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.