Q&A with DebRA Executive Director Brett Kopelan Part I

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When we approached Brett Kopelan, executive director for DebRA of America, about doing an interview, we realized what a hectic time it was as DebRA was relocating its offices then. But we were thrilled when Kopelan agreed to spend a little time with us to talk about his role. Kopelan became executive director of DebRA in January 2011 after serving on its Board of Trustees for three years.

In this first blog of the two-part interview, he shares his family’s own EB story and how he came to take on a significant role in an organization that has held such personal meaning to him and his family.


EB Resource (EBR): For those who may not be familiar with your own EB story, can you share a little about how you first became aware of the organization and then later got involved?

Brett Kopelan (Brett): In November 2007, my first and only child Rafaella was born and diagnosed with recessive dystrophic EB. Getting a diagnosis was a little difficult even though we were in the NICU. It surprised me that it took 5 or 6 days to even get an idea of what it could be given that we live in New York City that has a multitude of hospitals and medical schools. After they told my wife, Jackie, and I what they thought it was I called my brother who is a physician and after his response which consisted of “oh” and a four-letter word, I ran to the computer to Google it. That’s when I realized a Google habit can be a bad thing when I started reading about the disease and what was in store for my daughter and us. At that point, I said I really needed to find a national organization and to start networking so that I could find the researchers working on a cure or treatment. My first call was to the DebRA offices here in New York and to the DebRA Nurse to start gathering as much information as I could about EB.


EBR: So you were basically going through the same thought processes and actions as do families who come to your organization now upon learning of an EB diagnosis. What was that experience like?

Brett: At first, it wasn’t scary; it was exciting, especially given what the two physicians said to us. Then it got downright scary. When my daughter was born, she was missing skin on both feet and the back of one hand. She was two weeks late and our OB/Gyn and the on-call pediatrician at the hospital both said ‘don’t worry, she’s just overcooked,’ and that was the official diagnosis. So Jackie and I thought, ok no big deal. About six hours after I left the hospital, my wife called and said they’d brought Rafi into the NICU. The next morning when we went up to see her that’s when, as I put it, the earth fell out from under our feet. She had blisters all over her body and they didn’t know what was going on. A few days later, we were lucky that there happened to be a pediatric dermatologist who happened to be walking the floor of the NICU who happened to hear someone say ‘what is the cause of these blisters’ and she happened to have experience with EB in fellowship. So there were a lot of things that intersected to help us get some kind of a diagnosis, which I later learned, would be considered somewhat quickly.


EBR: How did you become actively involved working on behalf of DebRA?

Brett: When you start reading about the disease, you learn how grim the outcomes are in particular with Rafi’s diagnosis. So my first thought was I needed to know all the national or international researchers and funnel money to the ones I thought had the best chance of bringing a treatment to reality. I thought the best way to gain all that information was to network my way onto the Board of DebRA.


EBR: When you are first talking with someone about your role with DebRA and what the organization does, what’s the first thing you want them to know about EB, maybe something that you don’t feel is getting across to the public?

Brett: After my daughter was born, I said ‘wow, this is really the worst disease I’ve never heard of’ and we turned that into our tagline in our marketing campaigns. But I really want people to understand that, much like cystic fibrosis or muscular dystrophy, there is this rare disease out there that attacks the individual with EB and the family on multiple levels – physically, it’s clearly very painful and financially, it’s incredibly expensive to have the disease and emotionally, it’s extremely hard for people with EB and for the families to watch their child go through this. But, most importantly, I want them to know that now is one of the more exciting times for EB in that we’re so close to a cure. There’s more research going on, more companies coming in and getting involved, and more money funneling in to the research that we’re on the cusp of something huge. Treatments are just around the corner. So I like people to know that the best way to make sure that we can push the needle forward, so to speak, is to get involved, whether that be helping DebRA run one of our events or creating a local event that raises awareness and some money in their community. As awareness grows, money does usually follow, because when people see children that are in pain, they want to help.


EBR: So what’s the toughest part of your job?

Brett: I’m the executive director of DebRA, I’m a CFO for a private corporation and on the board of directors for two other companies. So I’m just tired. <laughs> But the hardest part of my job is balancing my schedule to help my wife care for an EB child and being able to push the organization forward and making sure that DebRA is successful.

Next week, we will feature part two of the Q&A with Brett Kopelan during which he discusses specific strategies and initiatives in progress at DebRA and what that could mean for the EB community.

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