Broadway stars join Lower Merion native to fight cystic fibrosis
A group of Broadway notables has come together to help Lower Merion native Emily Kramer-Golinkoff raise money for cystic fibrosis research. Through cold calls to hundreds of agents, the entertainment industry outsider managed to rally the stars, most of whom have no personal connection to cystic fibrosis, behind her inspiring message.
“We’ve had the privilege of witnessing the kindest, most committed, and compassionate parts of humanity,” Kramer-Golinkoff said, who herself has a form of it.
With the help of Broadway stars Laura Osnes (Grease, Anything Goes, Bonnie & Clyde), Javier Muñoz (In the Heights, Hamilton), Christy Altomare (Mamma Mia, Anastasia), and fellow Lower Merion graduate Gideon Glick (Spring Awakening, Significant Other), as well as actress Sarah Levy (Pop’s Schitt’s Creek), Kramer-Golinkoff’s foundation, Emily’s Entourage, has created the Anyway Campaign. The campaign is centered around the “Anyway” music video. It’s an understated, folky anthem that inspires other sufferers of chronic illness to “rise up, anyway.” The song is a testament not only to the power of Kramer-Golinkoff’s story but to the power of group coordination.
In 2011, Golinkoff founded Emily’s Entourage, a nonprofit that raises and allocates money for research on treatments for rare mutations of CF, a genetic disorder that causes severe respiratory and digestive complications. Kramer-Golinkoff describes the organization as “laser-focused,” funding research and information exchange with the singular goal of tangible results. She has even donated millions of her own cells to research on her particular mutation.
Kramer-Golinkoff’s work attracted the attention of Elizabeth Phillipson-Weiner, who also grew up in Lower Merion, and whose father, David B. Weiner, is on the Scientific Advisory Board for Emily’s Entourage. Phillipson-Weiner is a composer and songwriter who suffers from Crohn’s disease, an inflammatory bowel disease which, like CF, does not have a cure. At a songwriting retreat, she was tasked with writing a journal entry inspired by the things she likes most about herself.
“The things I liked most about myself were kind of born from the adversity I faced in dealing with a chronic illness, and I immediately thought of Emily,” Phillipson-Weiner explained. Although they both graduated from Lower Merion High School, several years apart, she knew of Kramer-Golinkoff only through her father. She disclosed that most of the lyrics for “Anyway” came verbatim from that original writing session. Phillipson-Weiner’s father played her song to Kramer-Golinkoff during a meeting, and this is where their collaboration began.
The music video for “Anyway” does not shine from star power alone. It shares the story of Emily, a little girl with a monster under her bed, who enlists her whole town to help shine enough light on the monster to scare it away. The video features the real residents of Kramer-Golinkoff and Phillipson-Weiner’s hometown, Narberth, plus family and close friends of the two. The concept of community-driven change echoes the real Emily’s philosophy on health care. “What if we change the goal [of treatment] from, ‘Happily ever after’ to ‘We’re a force when we work together’?” Kramer-Golinkoff posited at a talk at Stanford University School of Medicine. The video, and its very nature as a collaborative project between patients and performers demonstrates that strength in numbers can be a powerful force.
A CF diagnosis once meant little chance of reaching adulthood, or of a life free from hospitalization and serious health complications. Then, in 2010, the FDA approved Kalydeco, the first drug to counteract the underlying causes of CF, rather than its symptoms. There are 30,000 Americans living with CF.
“What we’re hoping to do is to change the way that research is done, primarily with the focus of making it happen fast. There are patients whose lives hang in the balance, and when you have a progressive illness like CF, days, weeks, and years matter,” Kramer-Golinkoff explained. At 33, the Lower Merion native’s existence alone defies the odds, even among other CF patients like herself. 90 percent of patients will be able to take Kalydeco once new trials of the drug are approved. However, there is a small 10 percent for whom the struggle continues. Kramer-Golinkoff has a rare mutation of the CF gene called a nonsense mutation. For patients like her, Kalydeco is not the miracle it will be for so many others, making her foundation’s work even more crucial.
The Anyway Campaign asks for people to share the music video, use the hashtag #give9toshine, and donate $9 to CF research.
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Published at Mon, 16 Jul 2018 22:46:21 +0000