Emily’s Entourage, a Philadelphia nonprofit that works to raise awareness and money for cystic fibrosis (CF) research and drug development, joined forces with songwriter and composer Elizabeth Phillipson-Weiner on a fundraising music video project called The Anyway Campaign.
Emily Kramer-Golinkoff, 33, who was diagnosed with a rare and fatal mutation of CF at 6 weeks of age, co-founded Emily’s Entourage with her mother, Liza Kramer. The nonprofit was recognized as a White House Champion of Change by former President Obama’s Precision Medicine Initiative and has awarded more than $3.3 million in research grants.
Inspired by Kramer-Golinkoff’s courage and tenacity, Phillipson-Weiner reached out after participating in a songwriting retreat in California.
“Emily and I both grew up, eight years apart, in Lower Merion. We went to the same school,” she said. “Although we never crossed paths when we were younger, Emily was always on my radar.”
Encouraged at the retreat to write a journal entry about what she liked most about herself and turn it into a song, Phillipson-Weiner came to see that the pain born of her battle with Crohn’s disease had the power to unite worldwide sufferers of chronic diseases.
“It is so important … not to allow your circumstances in life to bury you; dealing with a struggle you have to overcome on an everyday basis can make you strong in ways you never imagined,” Phillipson-Weiner said.
After meeting through Phillipson-Weiner’s father, a vaccine expert and research scientist who is a member of the nonprofit’s Scientific Advisory Board and Leadership team, the women began to brainstorm.
“Originally, we had an idea to make a music video for my song ‘Anyway’ because we wanted to share Emily’s story with a larger audience,” Phillipson-Weiner said.
The duo began cold contacting “hundreds of agents, managers, friends, and friends of friends,” Phillipson-Weiner said. Eventually, they found themselves working with five television and Broadway stars.
“Being able to recruit such amazing individuals successfully was incredible. Elizabeth’s vision and resolve allowed us to locate people who were so moved by our mission that they couldn’t say no,” Kramer-Golinkoff said. “Javier Muñoz [of Hamilton], [Tony Award nominee] Laura Osnes, Gideon Glick [of Spring Awakening], Christy Altomare [of Anastasia] and Sarah Levy [of Schitt’s Creek] — the Broadway stars and members of Hollywood who lent their voices to Elizabeth’s song and performed in the music video — were so compassionate, kind and generous.”
None of the stars has a personal connection to CF, Kramer-Golinkoff said.
“These are individuals who, in different, unforeseen ways, connected to Elizabeth’s song. This proves that when you put needs out into the universe, truly spectacular things can happen,” she said. “If more people were willing to step up and embody magnanimity, the world would be an infinitely more wonderful place.”
At its core, the melodic campaign is about hope.
“When you are dealt a bleak deck of cards it can feel really defeating. Through my experience with Emily’s Entourage and The Anyway Campaign, I’ve come to see that realizing you have the capability to transform desperation and fear into positive action is empowering,” Kramer-Golinkoff said.
