EB Community Member, Rafi Kopelan, to be Honored with Spirit Award
The debra of America Spirit Award is given each year to an adult and a young person with EB who have not only faced the challenges of the disorder but have made a positive impact through awareness, fundraising, or by leading exceptional lives.
On Saturday, October 26, 2024, Rafaella “Rafi” Kopelan will be honored with the Youth Spirit Award at the debra of America Benefit at SoFi Stadium in Los Angeles, CA. RSVP here!
“I am honored to receive the Spirit Award from debra,” shares Rafi. “I am lucky that I have gotten so many amazing opportunities to speak about living with EB. Even though I hate being called inspirational, it is important for people to understand the challenges those of us living with EB have to face and hopefully that understanding leads to more funding for treatments and one day a cure. Thank you debra for this award and for continuing to help those of us who live with EB.”
Get to know Rafi in her own words below:
“My name is Rafaella Lily Kopelan, but people call me Rafi. I was born in New York City in 2007, and I was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB) soon after I was born.
About five years ago, my parents and I moved to Colorado where I could be closer to a hospital that has a specialized EB center. Given that I have surgeries every couple of months, it has been a lot easier driving to the hospital than having to fly to Cincinnati from New York City. I am currently a junior in high school and am starting to look at colleges where I will study to be a preschool teacher.
While I don’t let having EB define me, I have been a very vocal advocate for people living with EB. I have been interviewed for news pieces on television, and in magazines and online publications like the Huffington Post and People.com. I have spoken about living with EB at biotechnology companies like Abeona, Shire, Amicus and Chiesi. I was even invited to speak at Mölnlycke’s headquarters in Gothenburg, Sweden. When I was younger, I was in a television commercial to raise awareness about EB and was featured on a video billboard in Times Square in New York City for three months.
I love browsing social media and listening to music by Taylor Swift, Chappell Roan and others. Not so long ago I decided to start a TikTok account where I film get-ready-with-me videos in the mornings and discuss makeup. I have amassed an audience of about 635,000 people and the video where I discuss my EB has been viewed around 10 million times with more than 25,000 comments. Now I get recognized all the time, even when we were in Hawaii."
debra of America looks forward to celebrating Rafi and her amazing achievements and strong spirit at the debra of America Benefit on October 26th!
