Our #FallinLovEE with EE Series continues this month, this time with longtime EE friend, volunteer, and go-to gal, Sarena Snider. As Sarena recounts how she fell in love with Emily’s Entourage, we are warmly reminded that our Entourage is the most special network of friends and family, the people we hold closest to our hearts, and the ones we can’t imagine traveling this journey without. Here is Sarena’s story:
Emily and I went to college together at Penn, and we both graduated in 2007. While there, we connected through our close mutual friend Lisa. I also vaguely remember seeing Emily in a communications class, but we didn’t interact that much. I often wonder what it would have been like to have a friend like Emily through the ups and downs that define college life.
I was nominated as an Emily’s Entourage Champion in 2015. Despite living on the West Coast–far from the EE epicenter in Philadelphia–I was drawn to this vibrant community.
From what I had seen on social media, an outpouring of loyal supporters indicated that there was something special about EE—there was a seemingly infectious dedication on the part of its volunteers. I was moved by Emily’s story, and decided I wanted to join the movement.
Around that same time, in December of 2015, Emily came to Los Angeles for the taping of a TV show, The Doctors. Emily, her mom Liza, and I, all spent time together in West Hollywood before they left to meet with pharmaceutical companies in San Diego. I’m not sure exactly what happened from there, but, as is the case with so many people, we connected on a deep level and our friendship really took off.
From that point on, Emily and I grew close. My dad was battling bladder cancer, and she became a major source of support during that time. She checked in with caring text messages, offering a kind of support that was uniquely gentle and compassionate. We had a long-running text chain; sometimes she’d check in every day.
What made her different than other friends was that she asked me specific questions about my dad’s health, almost forcing me to reflect. She allowed me to be vulnerable, and there was an unspoken understanding in that Emily truly knows what it means to fight and could empathize deeply with our family’s pain. I don’t know how I would have gotten through this time without people like Emily.
In our texts, she would rarely talk about herself(!)—she was more concerned with my well-being, no matter how hard I tried to direct the conversation back to her. Her support and compassion got me through the darker days, until my dad passed away in April of 2016.
Emily, Liza and I continued to develop a bond as EE applied for a grant through the Snider Foundation, which my dad had set up to continue his philanthropic efforts. I got to know so much more about EE’s groundbreaking work and Emily’s laser-focus to help those born with life-threatening nonsense mutations.
I explained to our board that EE encompassed so much more than Emily’s battle with CF, and that she was unquestionably changing the way biomedical research was conducted.
I moved back to the East Coast in May of 2016 and finally got to see her more often and witness her tireless devotion up-close. That following fall, Emily and I both attended the FasterCures conference in NYC. Emily was mentioned in front of thousands of people as a pioneer for patient-directed medical research. I thought to myself, “Emily is so, so humble. She is a superstar in the eyes to many, but is not affected by it whatsoever! Emily was born with the gift of being a leader, a visionary, and she has a natural talent for relationship building.
We still have a long-distance text chain, where she often messages me late at night. She has a marathon-esque endurance when it comes to work ethic. But this is not just work for her—it’s like a divine calling. Emily has the rare courage to ask for help and collaboration in reaching her goals. She is never afraid to ask difficult questions. It’s impossible not to be enamored by Emily’s bold approach, devotion, attention to detail, curiosity, thoughtfulness, sensitivity, and more.
The first EE Gala I attended was in December of 2016. I was blown away by the EE community; I have been to many galas and events, but this one brought me to tears and it renewed my faith in the power of one individual to build a movement.
The aspect of the gala that stuck with me is that there were so many other people at the event who felt just like me. Emily has touched so many individuals—many of whom are now friends—through her care and compassion, her leadership, her dedication to friends and her community, and the fact that she truly makes time for people. In the midst of running EE, going to meetings, writing, emailing, managing her daily treatments—Emily devotes herself and gives her undivided attention to those around her. In the age of tech, she is so fully present when she’s with other people. (And, I don’t think she’s ever written a stock email in her life!)
Emily shows that there is potential in every moment—in every difficult or heartbreaking situation—to see opportunities and goodness in the world. This comes from within.
She taught me that in times of adversity and setback, you can build yourself and others up. It all comes down to love.
Emily understands that illness can be isolating, so she built a community. She is determined to find a cure for CF, but she is equally as concerned about those around her. She lets other people know that they are not invisible, no matter what they are going though. In turn, she has become a visible light to all of us, and there is no other option but to fall in love with Emily and her Entourage.