Emily’s Entourage Launches Its First-Ever Virtual Benefit for Cystic Fibrosis
EENY: LIVE! Will be A Virtual Benefit to Raise Critical Funds for Cystic Fibrosis Research
New York, NY — Emily’s Entourage (EE), an innovative 501(c)3 foundation that has raised over $7 million since 2011 to speed research and drug development for nonsense mutations of Cystic Fibrosis (CF), announced today the launch of its first-ever virtual benefit, EENY: LIVE!—a reimagined virtual experience for a global Entourage, on Wednesday May 27 at 8pm ET. In light of COVID-19, the organization made the decision to convert its annual New York City benefit, EENY, to a virtual format, enabling people from around the world to safely converge for the event.
EENY: LIVE! will foster connection, community and hope, featuring musical performances, remarks from co-founder Emily Kramer-Golinkoff, surprise appearances, voices from the CF community, and more. It will remind guests of a truth that underlies the mission at EE: that desperation can spur the greatest innovation. People are powerful and together, they are capable of transformative change, even against great adversity. Funds raised through EENY: LIVE! will fuel the lifesaving research to accelerate breakthroughs and a cure for nonsense mutations of CF.
“Currently, the world is facing a crisis of unprecedented proportions. From managing infection control and physical distancing to dealing with uncertainty and grief, the CF community has a long history of navigating adversity and finding ways to dig back from challenging situations,” said Emily Kramer-Golinkoff, co-founder of EE. “EENY: LIVE! will draw on this experience to offer unique hope, insight, and a path forward to individuals from around the globe, while raising critical funds to advance EE’s life-saving mission. Fatal illnesses like CF do not wait for pandemics to pass, so neither can we.”
The work of EE is particularly pivotal now as there have been game-changing breakthroughs for roughly 90% of the CF population, but those with nonsense mutations fall into the outlying 10% that do not benefit from these advances. Founded in 2011 by Emily and her family and friends, EE applies an entrepreneurial approach to expediting life-saving treatments and a cure for those with nonsense mutations of CF. While rare among those with CF, nonsense mutations are the cause of approximately 12% of all genetic diseases, impacting roughly 30 million people worldwide and including certain forms of muscular dystrophy, blood disorders and even some forms of cancer.
EENY: LIVE! is a collaboration between EE and Eesho, a movement fueled by changemakers who insist on living life to the fullest by collaborating with musicians, artists, dancers and a range of creators to host experiences that inspire deep connection. The headline corporate sponsors for this year’s virtual benefit include Vertex Pharmaceuticals (Amethyst sponsor) and Tito’s Handmade Vodka (Violet sponsor).
Since its inception in 2016, EENY has raised over $600,000, attracting rising business and philanthropic leaders, young professionals, community members, and corporate partners from around the world, to support EE’s mission. The event is the ultimate embodiment of the philanthropic spirit and collective power of millennials.
Admission to EENY: LIVE! is free, but registration is required. Sponsorship and donation opportunities are available. To register, become a sponsor, or make a donation, please visit: www.emilysentourage.org/eeny-
About Emily’s Entourage
Emily’s Entourage is an innovative 501(c)3 foundation that accelerates research for new treatments and a cure for nonsense mutations of Cystic Fibrosis, a fatal genetic disease primarily affecting the lungs and digestive system. Since 2011, Emily’s Entourage has awarded millions of dollars in research grants, launched a CF gene therapy company recently acquired by a large pharmaceutical company, and led worldwide efforts to drive high-impact research and drug development. The organization has been featured in national media, including the New York Times, STAT, CNN, People, and more. To learn more, visit EmilysEntourage.org.
For media inquiries and interview opportunities, please reach out to Kira Rentas, Senior Marketing and Program Coordinator, at firstname.lastname@example.org or 631-902-1993.
Screenshots and recordings of the virtual benefit are available upon request.