Blooming Together: A Night of Hope at the 2024 Emily’s Entourage Gala

On a radiant Saturday evening, October 5, 2024, the Mann Center for Performing Arts in Philadelphia became a beacon of hope and unity as Emily’s Entourage (EE) hosted its annual Evening with Emily’s Entourage gala, “Efflorescence”. This year marked a significant milestone—the 13th anniversary of Emily’s Entourage, a testament to the organization’s unwavering commitment to the cystic fibrosis (CF) community. After two consecutive years of rainy weather, guests arrived to a night filled with sunshine and optimism, eager to honor the resilience of those affected by CF and to witness the blossoming advancements in research for the final 10% who still lack mutation-targeted therapies.

Business and philanthropic leaders, young professionals, community members, and innovators from the biotech and life sciences sectors came together under one tent, united in their commitment to advancing lifesaving treatments for the final 10% of the CF community. The evening kicked off with a celebratory champagne toast, welcoming VIP sponsors and esteemed guests to an exclusive reception with stunning views of the brilliant Philadelphia skyline. The warm atmosphere perfectly reflected this year’s theme, “Efflorescence,” symbolizing the budding potential of innovative therapeutic possibilities for the final 10% of theCF community.

As attendees arrived, they were greeted with drinks, snacks, and heartfelt welcomes from the Kramer-Golinkoff family, who enjoyed the festivities from the safety of a private tent, safeguarding EE Co-Founder Emily Kramer-Golinkoff, as she continues to navigate the challenges of advanced-stage CF.

Following the VIP reception, guests transitioned to a second tent for the main program, which was streamed live for the supporters from around the globe. Coby Golinkoff, EE board member and Emily’s brother, emceed the evening, guiding both in-person and virtual attendees through an uplifting celebration of growth, resilience, and the transformative strides being made in the quest to find breakthroughs for the final 10% of the CF community.

“Tonight, Emily’s Entourage turns 13. A time of transformation, 13 marks that transition between outgrowing who you were and stepping into who you will be. It’s a milestone of becoming.” – Coby Golinkoff

“When we started Emily’s Entourage in 2011, it began as a small seed of an idea,” Coby continued with conviction. “Now, what were once early seeds of hope are transforming into buds of promise—buds of progress. They’re breakthrough therapies that extend and improve the lives of the final 10%. They’re clinical trials reaching real people with CF. EE is in bloom!”

Coby acknowledged the unwavering commitment of EE leadership and staff, the scientific community, CF companies, and the broader Entourage, all of whom have created the conditions for EE to flourish. He expressed deep gratitude to the event’s generous sponsors, including Presenting Sponsor Vertex Pharmaceuticals Inc.; Dream Team Sponsors cystetic Medicines, Inc. and Boehringer Ingelheim; Individual Presenting Sponsors Jill and Mark Fishman, Marcia and Ned Kaplin, and the Eli and Pauline Nierman Family Foundation; and in-kind donors like Harvest Seasonal Bar and Grill, IMS Technology Services, and Remixologists.

“It is your collective energy that enables us to grow into our fullest form.” – Coby Golinkoff

Next, Coby introduced Shannon Zizzamia, who spoke passionately about her connection to EE. “Emily’s Entourage holds a very special place in my heart,” she shared, recounting her first encounter with the organization in 2019. She expressed admiration for Emily’s tenacity in advocating for those with CF, saying, “Instead of sitting around and waiting, she was doing something about it. How extraordinary is that?”

Her heartfelt tribute culminated in a poignant recognition of The Borgioni Family—the gala’s honorees—and their collective resilience, especially as both of their sons bravely lived with CF, including Michael, who passed away in 2019.

Following Shannon, Barb Borgioni embodied strength and love as she addressed the crowd. “I am so proud and honored to be up here speaking in front of such an incredible group of people,” she began, expressing deep gratitude to Emily, Liza, and the entire EE team for the honor bestowed upon her family. Reflecting on her family’s own journey with CF, she recounted their first son Joey’s diagnosis at just 16 months old and the challenges faced when their second son, Michael was then born with the same disease.

“We had 25 years filled with great memories,” Barb shared. As she spoke of the heartbreaking loss of Michael, she rallied the audience with a powerful call to action fueled by hope and urgency: “The way we go on is to fight with everything we have to find a cure for the final 10%… so that no one will ever have to go through what our family and others in this room have gone through.”

Joey Borgioni concluded the honoree speeches with a heartfelt tribute to his brother. “When you know the progression of this disease is actively deteriorating your body, it makes you realize just how fragile and precious life can be,” Joey reflected.

“Unfortunately for the people with CF in the final 10%, we are just one breakthrough short. This is who Emily’s Entourage fights for.” – Joey Borgioni

Following a montage video that highlighted not only the scientific progress being propelled by EE but also the stories of others living with CF, Emily delivered her deeply personal and profound remarks from the Kramer-Golinkoff family tent on the other side of the venue. She recounted how quickly life with CF can change, sharing a moment from her 39th birthday this past January. After a day filled with love, happiness, and feeling healthy, CF struck without warning in the form of a severe lung bleed.

“That is life with CF. I live with this constant awareness that something catastrophic can be lurking, ready to upend my life and my future at any moment,” she explained.

She then spoke about the surreal experience of outliving her life expectancy with such an aggressive disease, and the mixed emotions that come with approaching her milestone 40th birthday this coming January—a milestone she never imagined reaching.

Her sister, Julia, echoed these sentiments in her own speech, reflecting on the unimaginable journey of watching Emily surpass the expectations once set by doctors, and her heartache as she observes the swift passage of time and the steady decline in Emily’s health.

“As the CF landscape exists today, this is Emily making it, ” Julia stated.

“But I don’t want 40 to be some finish line for my sister to cross. Something to survive to. I want 40 to be just another inflection point. Something to live beyond. And I want, more than anything, for it to be one of many to come.” – Julia Kramer-Golinkoff

Julia’s stirring call to action spurred the crowd, and together with her brother, Coby, they led a fierce five minutes of generosity, surpassing the evening’s fundraising goal and raising an awe-inspiring total of $1.34 million to support innovative CF research. In addition, they announced the ongoing $500k match campaign, where all donations will be matched dollar for dollar through December 22, 2024—doubling the impact of every gift in the search for a cure for those who, like Emily, wait with bated but fading breath.

The gala was not just an event; it was a celebration of resilience, love, and the unyielding spirit of the CF community, all united in the quest for a cure for 100% of individuals with CF. Thank you to everyone who made this night possible—together, we are blooming for a brighter tomorrow.

View the program in its entirety below and check out our event photos here.