Emily’s Entourage to Host 4th Annual EENY: Ultra Violet CF Fundraiser May 4

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by Mary Chapman |

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The non-profit organization Emily’s Entourage is teaming up with event coordinator Eesho for its 4th Annual Emily’s Entourage New York, a fundraiser for new treatments and a cure for cystic fibrosis (CF).

Known as “EENY: Ultra Violet,” the talent-laden event will begin at 7 p.m.  Saturday, May 4, at Anderson Contemporary in New York City’s Seaport District.

By adding Eesho to the effort, Emily’s Entourage hopes to exceed last year’s fundraising total of more than $150,000. Eesho collaborates with artists, musicians, DJs, and other creative types to put on parties and other events.

Emily’s Entourage foundation is particularly interested in new treatments for CF patients with nonsense mutations, which are those that result in a truncated, incomplete, and usually nonfunctional protein product.

“There are game-changing breakthroughs for roughly 90 percent of the CF population, but those of us with nonsense mutations fall into the outlying 10 percent for whom there’s still nothing,” Emily Kramer-Golinkoff, Emily’s Entourage co-founder and a CF nonsense mutation patient, said in a press release.

“Events like EENY — and the work of Emily’s Entourage — propel our singular goal to accelerate breakthroughs for 100 percent of the CF community, driven by the belief that everyone with CF deserves a healthy, hopeful future, nobody left behind,” she said.

The event’s musical lineup features the French DJ duo FDVM, known for good vibes and upbeat house music; pop and R&B DJ DeModa, who has a hit single, “Downtown Glow”; DJ Coolhand, also known as Luke Joachim; and singer, songwriter, and pop-harpist Lexie Lowell.

Visual artists include experimental artist Alex Nero, 3D painter Murt, graffiti artist Ian Sullivan, animator Julie Gratz, perceptual artist Zeehan Wazed, and light artist Adam Marz.

“Violet” Corporate sponsors for this year’s EENY include: Eloxx PharmaceuticalsTito’s Handmade Vodka, and Vertex Pharmaceuticals.

Tickets are $125 each; individual sponsorships are $300. There will be an open bar and hor d’oeuvres.

Emily’s Entourage has raised more than $4 million since it was founded in 2011, and has awarded $3.5 million in grants. It aims to advance research and drug development for nonsense mutations of CF. Such mutations are a class of genetic mutations in which a premature signal is introduced in the DNA sequence necessary for protein production. The mutation prematurely ends protein synthesis, giving rise to an abbreviated and non-functional or poorly functional protein.

According to Emily’s Entourage, nonsense mutations affect some 30 million individuals globally, and cause roughly 12% of all genetic disorders. The foundation believes its work could extend beyond the CF field, to a wide variety of genetic diseases caused by nonsense mutations.