Emily Kramer-Golinkoff, a 30 year old with advanced stage cystic fibrosis and cystic fibrosis-related diabetes, is Co-Founder of Emily's Entourage, a 501(c)3 that raises funds and awareness to accelerate new treatments and a cure for rare (nonsense) mutations of Cystic Fibrosis. She is Manager of Strategic Initiatives and Operations at the Penn Medicine Social Media and Health Innovation Lab and a nationally recognized patient advocate and speaker. Energized by recent breakthroughs for other CF mutations, Emily and her Entourage have raised over $1.5 million since 2011 and led worldwide efforts to fast track research on rare nonsense CF mutations through research grants, scientific symposia, and collaboration among leading scientists in this area. With only 35% lung function, Emily spends over 3-4 hours a day on treatments, injects multiple insulin shots, and takes countless pills to slow progression of her disease.
When a group of passionate people come together, great things can happen! That’s the story of Emily’s Entourage, a nonprofit that raises funds and awareness to help find treatments and, ultimately, a cure for rare mutations of Cystic Fibrosis. Our guest this week on BetterWorldians Radio is Emily Kramer-Golinkoff, co-founder of Emily’s Entourage. Emily will discuss her life with Cystic Fibrosis and how she hopes to fast track research to save lives.