Emily’s Entourage to Host 2024 Gala, “Efflorescence,” Celebrating Pivotal Breakthroughs in the Race to Develop Lifesaving Therapies for the Final 10% of People with Cystic Fibrosis

Emily’s Entourage’s annual gala invites the public to join leaders in science and the cystic fibrosis community to make a meaningful impact by celebrating advances in research and supporting life-saving therapies for the final 10% still awaiting effective treatments.

Philadelphia, Pennsylvania – October 2, 2024 – Emily’s Entourage (EE), an innovative 501(c)3 accelerating research for new treatments and a cure for the final 10% of people with cystic fibrosis (CF), announces its annual gala, “Efflorescence,” to be held on October 5, 2024 at The Mann Center for Performing Arts in Philadelphia. This year’s gala will celebrate a prolific period in CF research, with major advances bringing hope to those who do not benefit from current mutation-targeted therapies and are still waiting for life-saving treatments.

“Efflorescence”—meaning “to bloom”—symbolizes a critical juncture in EE’s mission: after 13 years of laying essential groundwork, the organization is now on the brink of driving critical breakthroughs for those left behind by existing CF treatments. Since its founding, EE has raised over $15 million, fueling innovative research focused on those within the CF community who do not benefit from available therapies—a subgroup historically overlooked in drug development.

Why This Matters: Leaving No One Behind in CF Care

For most people with CF, groundbreaking mutation-targeted therapies have been life-changing. But for the remaining 10% that do not benefit from these treatments, the drugs offer no benefit, leaving them vulnerable to rapid disease progression, a diminished quality of life, and shortened lifespans.

“We’re no longer just chasing a breakthrough,” says Emily Kramer-Golinkoff, MBE, co-founder of EE and a person living with advanced-stage CF. ” After more than a decade of relentless work, we’re finally seeing the fruit of our labor—scientific advances that are advancing through the pipeline that could transform the future for people in the final 10% of the CF community like me, who have been waiting far too long for life-saving treatments.”

Throughout the past year, EE has made remarkable progress in advancing potential treatments for the final 10% of people with CF. Most recently, the organization launched CF Clinical Trial Connect (CTC), a global database designed to connect individuals who do not benefit from current CFTR modulators to cutting-edge clinical trials, overcoming recruitment challenges and accelerating the development of potentially life-saving therapies.

EE also awarded its inaugural collaborative research grants, funding high-impact projects focused on enhancing the delivery of therapeutic cargo delivery to restore CFTR function, and innovative phage therapies designed to combat antibiotic-resistant pathogens prevalent in people with CF. These projects, selected for their potential to deliver novel, targeted treatments, represent a critical step toward closing the treatment gap for this underserved group.

The progress is not just scientific—it’s personal. Behind every potential breakthrough, there are families who finally see hope where there was once none, researchers spurred to action by the unmet need, and a global community of supporters working tirelessly to rewrite the future for CF.

An Evening of Celebration and Doubling Impact

This year’s Evening with Emily’s Entourage gala, honoring the Borgioni family in loving memory of Michael, will provide a profound opportunity to join this movement and make a meaningful difference. Guests will hear heartfelt reflections from family members of those affected by CF, highlighting the personal journeys and hopes for a future without this disease.

Attendees will also have the chance to amplify their impact through a $500,000 matching challenge, where every dollar raised will be matched, effectively doubling contributions and accelerating the race to new treatments.

Tickets are available to the general public, with the option to attend in person by purchasing tickets or virtually via livestream. The livestream is free to attend but requires registration. For more details on how to attend or to secure tickets, please visit www.emilysentourage.org/phillygala24.

Event Details:

• Date: Saturday, October 5, 2024
• Time: 6:30 PM Doors Open; 7:15 PM Program Begins Promptly
• Location: The Mann Center for Performing Arts
• Tickets & Livestream Registration: https://www.emilysentourage.org/phillygala24/

The Evening with Emily’s Entourage gala is made possible by Presenting sponsor Vertex Pharmaceuticals, Inc.; Dream Team sponsors Boehringer Ingelheim and cystetic Medicines, Inc.; and Violet sponsors 4D Molecular Therapeutics, Viatris, ReCode Therapeutics, Green Family Foundation & Firstrust Bank, Enterprise Therapeutics Ltd., among others.

“The EE gala is an opportunity for everyone to join a movement that’s changing lives,” says Kramer-Golinkoff.  “It’s a celebration of hope, scientific breakthroughs, and the power of community. By coming together, we’re turning what once seemed impossible into a reality: breakthrough therapies for those in the final 10% of the CF community, who are waiting with bated and fading breath.”

 

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. Since 2011, Emily’s Entourage has awarded millions of dollars in research grants, launched a now-acquired CF gene therapy company, developed a patient database 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

Hannah Kleckner

Director of Marketing and Communications

hannah@emilysentourage.org