Emily Kramer Golinkoff is a 33 year old powerhouse with big eyes and a fatal disease. In 2011 Emily's condition was deteriorating; she was running out of treatment options, and it was terrifying. Instead of giving up, she decided to do something about it. Along with her mother, Liza Kramer, Emily co-founded Emily's Entourage, a Philadelphia-based nonprofit dedicated to accelerating research and drug development for Cystic Fibrosis. The urgency of Emily's condition is spurring revolutionary research and drug development that could help the roughly 30 million people worldwide who suffer from a genetic disease caused by a nonsense mutation, including forms of muscular dystrophy and cancer, as well as Emily's rare form of Cystic Fibrosis.
Elizabeth Phillipson-Weiner was diagnosed Crohn's Disease at age 14. Each day since has been a battle with her body, a constant balance between necessary care and her pursuit for quality of life. It's a struggle that resonates with anyone who suffers from a chronic disease, which is roughly 117 million people, or half of adults in America. As a musician and composer, Elizabeth channeled her experiences into a song called "Anyway", an anthem to encourage herself and others, a motivation to rise above illness and fear. Inspired by Emily's strength, she reached out to Emily's Entourage and they have partnered on a music video campaign that will raise critical Cystic Fibrosis awareness and funds. watch.
"Emily is my hometown hero. A fellow chronic disease warrior, when she didn't like the cards life had dealt her, instead of giving up, she decided to do something about it." - Elizabeth Phillipson-Weiner
The young women are supported in this effort by Broadways stars, including two-time Tony nominee Laura Osnes (Grease, Cinderella, Bandstand), Gideon Glick (Spring Awakening, Significant Other), Christy Altomare (Mamma Mia, Anastasia), Javier Muñoz (In The Heights, Hamilton) as well as hollywood talent such as Sarah Levy (Netflix's Schitt's Creek) , who are lending their voices to the song and video. The stars have generously donated their time, with the shared goal of inspiring hope and celebrating the power of community to make change.
Emily is counting on you to join the mighty Entourage, to pool your light and DESTROY THIS MONSTER with an avalanche of brightness. Emily's Entourage is seeking donations in the amount of $9 to shine a light on those left in the dark due to lack of research funding and awareness. Will you help make this video go viral and #GIVE9toSHINE? Shine your light, Share, Donate!
"Anyway" is a universal anthem for chronic disease fighters and fighters in general. The song captures one of the central themes of Emily's Entourage - that everyone has the power to rise above their circumstances and create change for themselves and within their communities.
Emily Kramer-Golinkoff - Founder of Emily's Entourage, a Philadelphia-based nonprofit to cure Cystic Fibrosis, suffers from a rare and fatal mutation of CF. https://www.emilysentourage.org/anyway-campaign/
Elizabeth Phillipson-Weiner - Lower Merion native, a composer and songwriter, is another chronic-illness warrior and identifies Emily as her Hometown Hero. www.elizabethpwmusic.com
Emily's Entourage is a 501(c)3 that fast-tracks research for new treatments and a cure for rare nonsense mutations of Cystic Fibrosis (CF), a fatal illness that Emily is fighting along with thousands of others. Thanks to overwhelming support, Emily's Entourage has formed an international Scientific Advisory Board of pre-eminent CF researchers and awarded over $2.5 million in research grants worldwide. Recognized as a White House Champion of Change for President Obama's Precision Medicine Initiative, Emily's Entourage has also been featured on CNN.com, People.com, Time.com, Yahoo Health, AOL.com, and more.
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