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29 Sep 2022

Emily’s Entourage Gets Creative to Host 11th Annual Gala in a Post-Covid World

The event will celebrate 11 years of impact, including more than $10 million raised to speed breakthrough research for cystic fibrosis 

Co-Founder and family — in strict medically-related quarantine since March 2020 — to attend and broadcast annual speech live from secluded tent on-site

Lower Merion, PA (Sept. 29, 2022) — How does a health-based nonprofit, led by a woman with advanced-stage lung disease, responsibly gather its supporters in a post-Covid world? Emily’s Entourage (EE), a 501(c)3 foundation that accelerates research for new treatments and a cure for the final 10% of people with cystic fibrosis (CF) who do not benefit from lifesaving mutation-targeted therapies, is getting creative.

On Thursday, October 13, 2022, EE will host its 11th annual Evening with Emily’s Entourage gala, “The Flight of the Monarch” — and it will look a lot different than years past. Traditionally a formal gala in December, this year’s event will be hosted outdoors at the Mann Center for the Performing Arts and has been moved up to October to accommodate the new format. But the most unique shift this year is who will be in attendance — and how. 

Emily Kramer-Golinkoff will deliver her speech live at The Mann Center from a secluded tent on a hilltop.

EE’s co-founder, Emily Kramer-Golinkoff, a 37-year-old with advanced-stage CF, has been in strict quarantine with her family since March 2020 to remain safe from the threat of Covid. No visitors, no grocery store trips, and definitely no galas — right? In keeping with the innovation and creative thinking that has powered EE for more than a decade, Emily and her family devised a solution that allows them to join the evening safely. The Kramer-Golinkoffs will join attendees at the Mann Center from a secluded tent on a hilltop, where they will greet EE supporters from afar and watch the live-streamed program throughout the evening. Emily will also deliver her highly anticipated live remarks from the remote location. 

“More than a decade ago, EE was born out of desperation, and over the years we’ve found that that desperation can spur incredible amounts of innovation and creativity,” said Emily’s Entourage Co-Founder, Emily Kramer-Golinkoff. “As a health-based nonprofit, we didn’t feel like we could responsibly gather hundreds of our supporters indoors, so we improvised. In true EE fashion, we didn’t see an obstacle, we saw an opportunity to shake things up and approach the gala in a new, fresh way.”

Since its founding in 2011, Emily’s Entourage has funded 25 research grants, secured $37.8+ million in follow-on funding, created a CF nonsense mutation patient registry and clinical trial matchmaking program to speed clinical trial recruitment, and launched a CF gene therapy company, Spirovant (formerly Talee Bio), that has since been acquired and is moving two mutation-agnostic CF therapies towards clinic.

This year’s Evening with Emily’s Entourage gala, “The Flight of the Monarch,” is made possible by Presenting sponsor, Vertex Pharmaceuticals Inc.; Dream Team sponsor, cystetic Medicines, Inc.; and Violet sponsors, AbbVie Inc., Bloomberg Philanthropies, Boehringer Ingelheim, Enterprise Therapeutics Ltd, Lovely, ReCode Therapeutics, Spirovant Sciences, Tito’s Handmade Vodka, and Viatris; among others. Marcia and Ned Kaplin and Ivy and Matthew Solomon will be recognized as honorary co-chairs.

Funds raised through this year’s event propel Emily’s Entourage’s singular mission to speed lifesaving new treatments and a cure for the final 10% of the CF community, including those with nonsense mutations. To learn more about the event details and purchase tickets to attend, please visit www.emilysentourage.org/phillygala22. 

###

About Emily’s Entourage

Emily’s Entourage is an innovative 501(c)3 that accelerates research for new treatments and a cure for individuals in the final 10% of the cystic fibrosis (CF) population that does not benefit from currently available mutation-targeted therapies, including those with nonsense mutations of CF. Since 2011, Emily’s Entourage has awarded millions of dollars in research grants, launched a CF gene therapy company, developed a patient registry and clinical trial matchmaking program to accelerate clinical trial recruitment, 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. Learn more at emilysentourage.org. 

Media Contact

Ashling Knight

Director of Marketing and Communications

Emily’s Entourage

ashling@emilysentourage.org

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The opinions stated by our guest contributors reflect the experiences and thoughts of the author alone. Our publication of these pieces does not reflect Emily’s Entourage’s endorsement or suggest a position on those opinions. The content on this site is for informational or educational purposes only and does not substitute professional medical advice or consultations with healthcare professionals.
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Merion Station, PA 19066

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