One of the most rewarding benefits of being a member of Emily’s Entourage is the chance to connect with extraordinary individuals from around the globe. Sometimes we connect with people who have Cystic Fibrosis (CF) themselves, and other times it is with family members and friends who have been with a loved one through the up and down roller coaster that is life with CF. And inevitably, we connect with family and friends who have lost the most special people in their lives to this cruel, unrelenting disease.
Zachary Bassin is one such very special person, and though we did not have the pleasure to connect with him directly, we have been so fortunate to develop a strong bond with his mom and closest friends whose fierce love for and devotion to him are a powerful testament to how extraordinary he was. That is why we were so deeply honored that Emily’s Entourage was selected as the charity partner for the inaugural Zack Bassin Memorial Golf Outing.
The event was an enormous success, embodying everything Zack loved and raising an astounding $10,000 for research on nonsense mutations of CF.
On May 21, over 100 friends and family members from Zack’s hometown of North Salem, NY as well as Marist College, where Zack studied Sports Communication, came together for a beautiful day of food, golf, and CF awareness. The event started with a breakfast, followed by 18 holes of golf and a luncheon, where Zack was remembered with a powerful tribute video. The event was an enormous success, embodying everything Zack loved and raising an astounding $10,000 for research on nonsense mutations of CF.
Everyone who talks about Zack, does so with a gushing heart and big smile. He is described as a thoughtful, gentle soul, who had a natural gift for comedy, sports, and bringing the most unique groups together. Most importantly, he is described as a devoted son, brother, and incredible friend.
What was most special about Zack, according to his mother Phyllis, was his “refusal to be defined by Cystic Fibrosis.” He wrote in his blog, “I know I will be battling my health constantly for the rest of my life, but that doesn’t mean I won’t find joy in the things I do.’’
And that, he did. Though he spent his childhood playing a variety of sports, Zack eventually developed a love for golf since it was the one sport he could continue playing even with diminished lung function. It was only fitting to honor his memory and incredible life—and raise critical funds for CF—with a golf tournament in his memory.
It was during the initial planning stages of the golf tournament that Phyllis met Emily and Liza. She was thrilled to learn about EE’s mission to fast-track research for nonsense mutations of CF, especially since Zack shared the exact same mutations as Emily, a double copy of W1282X.
It was quickly apparent to Phyllis that Emily and Zack’s similarities did not end with their shared CF mutation. Zack was beloved by so many because of his inherent kindness, humor, and zest for life. Phyllis saw these same characteristics in Emily. So when it came time to deciding where to give the funds, it was a clear choice for Phyllis and the golf tournament planning committee.
Zack was beloved by so many because of his inherent kindness, humor, and zest for life.
On behalf of Emily’s Entourage, we are deeply grateful to Zack’s supportive network of family and friends, and could not be more pleased to have them in our mighty Entourage. We are also reminded of the impact and reality of this disease—and that is our reason for fighting so hard, day in and day out. We do it for everyone living with CF and we do it in loving memory of everyone, like Zack, who was taken far too early because of this cruel, merciless disease.
Zack’s favorite quote from Rocky Balboa rings true to all of us at EE, “Life’s not about how hard of a hit you can give…it’s about how many you can take and still keep moving forward.”
We feel lucky to be part of Zack’s lasting legacy, and vow to keep moving forward, fighting with all of our heart and soul until everyone with CF can finally take a deep breath.