Desenhando um futuro sem FC: Recapitulação do evento virtual de 2021 da EENY

With the world is still in the throes of a global pandemic and in-person gatherings, while starting to take hold, still not yet a fully safe reality for many, Emily’s Entourage (EE) began the work of pivoting EENY, a traditionally New York-based event, to a virtual format once again. Yet, this time was different: spring — and the promise of the COVID-19 vaccines — was in the air.

And so, propelled by that renewed energy and hope, “The Magic Line: Drawing a Future Without CF,” a virtual event brought to you by EENY, was born.

The theme of the event expanded upon EE’s December 2020 “The Magic Line” campaign and drew inspiration from the children’s book, “Harold and the Purple Crayon.” Harold’s purple crayon allowed him to draw anything his imagination would allow. The theme was a  reminder of our own power to create the world we dream of — a world without cystic fibrosis (CF).

The vision was set, but the hardest questions remained. In these times of Zoom fatigue, would people show up? With so much hardship and need in the world today, would people donate? We are pleased to share that show up and donate they CERTAINLY did! This was a virtual event for the history books!!

The event kicked off with celebrity host, writer, producer, and investor (a true multi-hyphenate!), Erin Foster, who infused her signature dry, deadpan sense of humor throughout the night. Erin welcomed everyone and shared how she was introduced to Emily through an old family friend and came to learn about Emily’s Entourage.

“Emily is in a league of her own, a real change-maker, and a real bad-ass entrepreneur,” Erin asserted.

Erin went on to introduce the event’s rock-star co-chairs, Emily’s brother, Coby Kramer-Golinkoff, and dear friend, Jessica Rotman, who shared why the Entourage’s support is so critical right now. Currently, there are game-changing treatments for 90% of the CF population, but for the remaining 10%, there is still nothing.

To illustrate just how powerful the new treatments are, we briefly heard from Mary Frey e Gunnar Esiason, two adults with CF who spoke powerfully about how their lives have been transformed by these new, targeted therapies.

Gunnar explained, “In a matter of seven to 10 days, my future was unlocked. My life with cystic fibrosis changed enormously.”

Mary shared similar feelings. “The reality is still setting in that this is mine,” she said. “And that I have the opportunity to live.”

The impact of these new breakthroughs is dramatic, but they only benefit 90% of the CF population. For the final 10% of the CF community, including those with rare “nonsense mutations” of CF like Emily, there is still nothing. CF remains the same killer disease that it has always been.

“That is why we are here tonight, because 90% is remarkable, but it isn’t good enough,” Coby said.

Jess then extended heartfelt appreciation to the sponsors that made the event possible, including Presenting sponsor, Vertex Pharmaceuticals; Amethyst sponsor, Genentech; Violet sponsors, Arrowhead Pharmaceuticals, The Points Guy, Tito’s Handmade Vodka, and Viatris; along with many others.

Next up, we heard from members of the CF community who are part of the final 10% that do not benefit from the existing targeted therapies. They shared their challenges and fears living with CF and being part of the final 10%, but also their hopes for a breakthrough and their gratitude to EE.

“I can’t help but wonder when it will be my turn and I can’t help but feel afraid of being left behind,” explained Stacy Carmona, an adult with CF. “[Emily’s Entourage] gives me hope that people like me with CF are going to have a therapy or a breakthrough in our lifetime.”

Miguel Angel Rodriguez, a father of a child with CF, echoed that sentiment. “For us, Emily’s Entourage is our one beacon of hope for those of us with nonsense mutations.”

Their testimonials provided an important reminder of what is at stake and the people and families that EE is working so tirelessly to save.

Erin returned to introduce the next part of the evening, a major highlight of the virtual event! This year, instead of a keynote address, Emily had the honor of being interviewed by Rebecca Jarvis, Chief Business, Technology, and Economics correspondent at ABC News, and creator and host of the “No Limits with Rebecca Jarvis” podcast which profiles female CEOs, founders, and innovators.

Erin described the interview with Emily and Rebecca as “a match made in heaven” and we agree wholeheartedly. They discussed what drives Emily, what gives her hope, how she manages being a female entrepreneur while living with and fighting her own disease, and so much more. Rebecca aptly described Emily as “a woman on a mission.”

The interview concluded with Rebecca asking Emily, “If you could have people take away one lesson from your life and from your experiences, what would it be?”

“It’s so easy to go through life assuming that other people are smarter or have more access or have things under control,” Emily responded. “What I’ve learned from EE is that sometimes you are just the force that the world needs to lead a critical change. And I think that’s what EE is for the CF community and the final 10%.”

After the interview, Coby returned with a heartfelt and raw testimony about what it is like to watch his sister endure the cruelty of CF.

“Deep within me, in a place that I compulsively push down, I’m sad. I’m sad for what my sister lives with — the fear, the pain, the things CF steals from her and how hard she has to work just to breathe. And I’m scared. I’m scared about what the future holds.”

He spoke about how for him, the work of EE is deeply personal. It is about saving his sister, but for Emily, this is so much bigger than her.

“Her dream is to secure a better future for the final 10% of the CF community, and so now, that is my dream too,” he shared.

Coby concluded his remarks with a stirring call-to-action. “We’re here tonight because we envision a world where everyone with CF can breathe deep and free, and we realize that future is up to us.”

Progress towards that future ensued! In the three minutes that followed, $19,215 in donations poured in from 34 states and nine countries. In total, the event ended up shattering all fundraising goals, raising $213,792 to speed life-saving breakthroughs for the final 10% of the CF community — making it the highest-grossing EENY to date.

But the show did not end there! Coby recognized the 10 2021 EENY Champions, young professionals who stepped up to leverage their networks and talents to raise funds for EE. These awe-inspiring Entourage members collectively raised an astounding $21,412! Coby celebrated their achievements and announced the 2021 Champion of the Year, his co-chair, Jessica Rotman.

Finally, EENY steering committee members, Emily Priebe and Judah Levine, kicked off the after-party, featuring energizing musical performances by the supremely talented David Shaw, The Movement, Brianna Collichioe LUVRS. It was a moving way to close out a magical, change-making, and deeply inspiring event.

Emily’s Entourage would like to thank everyone who made “The Magic Line: Drawing a Future Without CF” possible: corporate, community, and individual sponsors, donors, champions, registrants, celebrities and influencers, musicians, steering and planning committees, and more! Thank you for your passion, your vision, and your partnership as we create the future we dream of — a future without CF. 

View the program in its entirety below.