The Worst Disease You've Never Heard Of...

Creating advertising to raise awareness for disease-research charities is a tricky business. The message has to be clear but not condescending. Stray too far one way and your risk mawkishness, too far another and you’re being callous. Fill the screen with abstract imagery and you risk confounding the viewer, present them with stark realities and you’re in danger of losing them altogether. It’s the struggle that work promoting the combatting of cancer, MNDs and heart disease constantly deals with, but how do you deal with the worst disease you’ve never heard of? 

Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder that causes extremely fragile skin. Children born with this horrific condition are often covered head to toe in painful sores (inside and outside of the body), and the needed specialized wound care supplies can cost more than $20,000 a month. While it is as common as cystic fibrosis and ALS, most people have never heard of it.

One of those people was Havas Worldwide Tonic ECD John Rea, who only found out about EB after his daughter researched the disease for a school project. He was so moved that he immediately started developing creative work aimed at raising awareness of EB and driving donations to Debra of America, a non-profit dedicated to funding research and providing services and programs for those with EB.

The team created an emotional campaign that shows the true face of the disease. Directed pro bono by Chris Groban of AtSwim, three powerful commercials show what EB families experience on a daily basis, from the painstaking process of changing bandages to the heartbreaking daily reality of being a small child with skin as fragile as a butterfly’s wing.

Needing a high-profile platform to launch the campaign, members of Tonic gathered in the famed Solomon R. Guggenheim Museum Rotunda on Monday, November 16th, for the 17th Annual Benefit for Debra of America. Tonic’s Managing Director and Chief Creative Officer Phil Silvestri was honored with the “Partners in Progress Award.” He then premiered the three commercials to the more than 400 guests in attendance, bringing many to tears. One of the attendees being honored, John Crowley, was so moved by the videos that he donated $100,000 on the spot.

Following their online debut earlier this month, we sat down with the three key-players in the story - Havas’ John Rea, AtSwim’s Chris Groban and, perhaps most importantly of all, John’s 14-year-old daughter Emily, who’s school project kickstarted the whole affair – to chat about how they made EB the worst disease everyone’s now heard of.

We understand that the road to this campaign didn’t follow a conventional route. How did you guys first hear about DEBRA and what made you get involved? 

John Rea - My daughter Emily was 14 years old at the time, and she had her middle- school science fair coming up. She came across one mother’s blog about having a son with EB, and that lit a fire under her to get involved. For her science project, she set out to find a cleaning solution that was better at killing the bacteria that causes life-threatening infections for those with EB.

She was able to conduct much of the research at Rutgers University. After the success of her project, she asked “What’s next?” She spoke with Brett Koeplan, the President of Debra, and he said that what they really needed was awareness. That’s where I came in.

Emily, how does it feel to have a massive ad campaign come out of research for your school project?

Emily Rea - While my science research helped EB children, I knew EB children and their families needed so much more. How do you save a life, the life of a brave little beautiful EB warrior? I knew I had to do more and I could do more. More people needed to know about this disease and the struggles their families face, it became my new mission. I cannot thank Havas Worldwide Tonic and their team enough for taking this pro-bono project.  The team went beyond donating countless hours and resources, each individual person really cared and became as dedicated and passionate to help as I was.

How did you hear about EB and DEBRA in the first place?

Emily Rea - I have been on a mission to raise awareness for EB research since reading a young mother’s blog chronicling her struggle and determination to help her son, Tripp survive. Tripp Alexander was grappling with Epidermolysis Bullosa (EB), a rare genetic connective tissue disorder that causes extremely fragile skin. I could not believe the young mom, Courtney Alexander, did not get her Disney ending. Even with all Courtney’s love, care and dedication, Tripp lived only 2 years and 8 months. After reading Courtney’s blog and falling in love with Tripp, I had a purpose in life. I couldn’t save Tripp, but I could honor him and his mother by helping other EB children. Courtney thanked and listed the DEBRA foundation on her website for all their help. I contacted them the next morning to see how I could help. 

John, what work had the charity done in the past? How did you feel you could help?

John Rea - After speaking with Brett, I realized that his organization had very few assets in which to help raise awareness about ‘the worst disease you never heard of’—only a few photos of some of the fundraising events and some educational videos about the disease on YouTube. I knew that we, at Tonic, could create some assets that would really shine a spotlight on the disease. 

Why was the decision made to create documentary-style pieces? Were there ideas to take it in a different direction? 

John Rea - The ‘Butterfly’ spot was the more metaphoric concept, and it played on the fact that kids with EB are called ‘Butterfly Children’ since their skin is as fragile as a butterfly’s wing. The spot with the young girl, Rafi, was actually originally entitled ‘Unwrapping/Wrapping’ and was going to have demo feel. However, the more we learned about the actual wounds, bruising and bandaging, we started to realize that a more documentary-style would bring much more impact and reaction. What these children and their families go through on a daily basis is horrific, and we wanted to show their true strength and courage.

How did you approach the idea of featuring kids with EB?  

John Rea - Early on in the strategic stage, Brett was urging us to not hold back when it came to depicting the horrors of the condition. He felt that the disease had lived in the shadows for far too long, in part because people were afraid to show the graphic nature of the condition. We didn’t want to sugar coat anything; we wanted to be honest. 

How involved were you with the steering of the shoot? What made you go with the guys at AtSwim? 

John Rea - I have done a few productions with Tomas Krejci, the founder of AtSwim, a few years ago.  It was like any other commercial shoot. Director’s treatments, location scouting, shooting boards, etc… with one exception:  the most difficult casting process I’ve ever been involved with. Thankfully Krejci and I had good chemistry. In March of 2015, while producing a video series for our client ViiV, to be featured on MyHIVHangUp.com, I told Tomas and Chris Groban that we were in the initial stages of concepting for this pro bono effort. And given our past work history, I asked if they would be interested in getting involved.

Chris, at what stage did you come on to the project?

Chris Groban - I had actually heard about it many months earlier while working on another project with John Rea. He told me broadly about this project they were thinking about. It was then that I learned about EB, which I had never heard of before. I wouldn’t be brought on board officially to start production until a couple months before shooting.

Had you heard of EB before? What sort of research did you do before embarking on the campaign?

Chris Groban - Until John explained it to me I had never been aware of this disease. My initial reaction was in hindsight exactly the same as those I tell now; a mixture of ‘this is the worst thing I’ve ever seen’ and ‘how have I never heard of this?’. The reaction is always that, and I think it was clear to John early on and certainly clear to me once I joined up that this is something people need to know about. I had the great pleasure to work directly with Brett and Jacki, who quite literally opened up their home to us. I did some research online beforehand, but the greatest knowledge for me came first hand from them as they walked us through their lives. That is the sort of spirit we hoped to put in these spots, to take the viewer past the facts and statistics and just look at this disease boldfaced.

How did you approach the subjects of the campaign itself? Was there an audition process of sorts? We can imagine it’s the kind of thing that needs to be considered very carefully.

Chris Groban - I suppose audition might not be the right word here, but in a sense yes. There are varying degrees of this disease. Some you’d hardly notice unless you got up close, which is not to say they don’t deal with the same hardships of course, but for the purposes of filming wouldn’t work as well in order to affect the audience in the way we wanted. On the other end of the spectrum, you have kids like Rafi and Asa. I think we always knew we needed to find someone at that end. I spoke with several kids and their parents, and to be honest I didn’t meet one I didn’t think was extraordinary. With Rafi, it became a no brainer, especially given Brett and Jacki’s involvement. Rafi was actually the one who spoke up and said that she wanted to be in it, which if you’ve met her should not surprise you. It’s outrageous how mature and utterly selfless she is. The question mark there was actually whether Jacki would be interested. I didn’t know then how wonderful the Kopelans are and how willing they were to open up. There is a tremendous amount of bravery in that family.

Asa and Maranda I had skyped with. We all fell in love with Asa. Since Rafi was set for Unwrapped we knew we were casting for Enlightened at that point, and I think the image of Asa with that butterfly in mind, it just clicked for us. We wanted to be able to make that pivot, to woo the audience in a way with how adorable he is, his genuine curiosity with bugs, before revealing that at just three years old he is so affected that he has a G-tube. I’d be remiss too if I didn’t mention how amazing Maranda was. She was from the beginning so willing to help us do this and to be that real life mother in the spot. 

How did you set up for the shoot? What needed to be in place?

Chris Groban - We knew we’d have to shoot both of these in one day, which meant we had to find one house that suited both spots. So for location, we looked at a few options, thinking actually that we didn’t want to uproot Brett and Jacki’s house. They were already so generous, to bring a whole crew and equipment into their home, it wasn’t an obvious choice for us. It took Brett telling us how willing he’d be to do that that made it a consideration, and I’m so happy for that. It allowed us to shoot Rafi in her actual room, which makes it all the more authentic.

Part of our preparation for Rafi in particular was for us to get educated on her wrapping process. A lot of kids share methods, such as salt or bleach baths, but we had to know exactly what Rafi did so that we could have a better understanding of which parts we could shoot. So we went to their house previous to the shoot and they allowed us to be present as they changed Rafi’s bandages. At that point we knew there was a lot we couldn’t show. What we saw, which is their daily life mind you, was terribly difficult to watch. We knew we had to craft a plan that allowed us multiple takes of unwrapping but in a way that did not put Rafi through undue pain.

Even with Asa there was an education process. We were originally looking to shoot his completely outdoors. Then we learned from Maranda that if Asa is in the sun, he can develop more wounds and blisters in real time. Even ignoring the obvious ethical reasons not to put young Asa through this, it was a challenge knowing that he could look far different from the first shot to the last shot. Ultimately for both, comfort and safety reigned supreme, and knowing how to achieve that helped us plan our shoot around it.

Can you talk us through the shoot? 

Chris Groban - We shot Asa first in the morning. I always feel a lot of the work we do is in the prep work, so I had already sat down with Asa the day before. I brought him (some might say bribed him) some of my old toy cars from when I was a kid. He loves cars and I think that helped a bit in getting his attention. Besides having EB, he is also just three, so we took it quite slow. There were many breaks between setups when we could bring the iPad in and keep his spirits up. Asa’s parents were invaluable in this process. Though I have to say, Asa was so good on his own too. He never whined or complained. I asked him when we were casting if he liked bugs and butterflies and he really did. I knew that would be the moment of truth, when we started placing our butterflies on him. But to his credit he never squirmed away. Both Asa and butterflies acted wonderfully. There were a few times, especially near the end, when I’d have to hold up a toy or something to catch his attention and really just guide his eye in a very matter of fact way. But he made it through.

Rafi’s shoot in the afternoon was very technical. Nowadays, especially with digital shooting, there’s a tendency to just shoot and shoot and work it out in the editing room. That really wasn’t an option here. I knew there was not going to be an 11th take when that meant excruciating pain for Rafi. So we had boarded all the shots in a way that I felt we could capture the most of the process without putting her through undue harm. Some shots are the actual first pass of unwrapping. I asked Rafi and Jacki to speak to each other as if we weren’t there. I wanted those little asides of Rafi speaking in real time about how she’s feeling, and Jacki saying what she needs to say to comfort her. That’s all real. Then there were some tighter shots in which I asked them to place some gauze and unwrap it, even if it had already been unwrapped. If we placed it and then took it off immediately, there was no chance of it ‘sticking’ which is what might have caused pain. So we did that in some select parts to help build out the coverage. 

We took both Jacki and Rafi aside into their basement, along with our sound crew, and that’s where the voice over happened. It truly was an off the cuff honest conversation. Rafi speaks well beyond her years. I knew I wanted her to have her own voice over. Her voice is so young and charming, but speaks with such maturity about such painful things. That dichotomy to me was pretty powerful. Both Rafi and Jacki were so candid with us. I really wanted them to tell their own stories, and I think that added so much to these spots. 

The kids portray such strength and character in their films. What was needed to keep the project from straying too far into pity?

Chris Groban - It was important to me to put each kid in a comfortable, familiar home setting. We could’ve crafted a torturous barren space with stark lighting, dwelling on some kind of hopelessness. But that wasn’t the point. By doing it the way we did, I think we helped push the idea that first and foremost these are kids. Asa truly is as happy go lucky as any three year old you’ve ever met, genuinely interested in the world around him. It just happens that when he tumbles it can become a serious problem. Rafi is the smartest eight year old I’ve ever met and a phenomenal painter. She has passion and love in her life, things she wants to achieve. In truth, I never once got the sense that they feel sorry for themselves. It hurts, of course, in many ways. But the kids themselves do not dwell on it. And I think for us to have done that would’ve been a mistake. All we had to do was to attempt to show their lives honestly. I also have to give credit to our editor Scott with handling that so well. I think he presented each story with great respect for these kids.

How hard was the shoot? We can imagine emotions were running high.

Chris Groban - It was really unlike anything I’d done before. We of course had the blessing of everyone involved, especially the kids. But there were definitely times when we had to stop and check ourselves.

There was one point during a break, Asa lost his balance walking and fell. Not even a fall really, just bending over and catching the ground with his hands. Any other kid you wouldn’t think twice about it. But Asa came up with his hands bloody. We took a good break then and mom took him aside. We were all horrified but were reminded by Maranda that this is every day for them. I think that was the first moment that a lot of the crew who were just there for the day really understood the nature of this disease. It takes so little to affect these kids. I checked then and throughout the shoot with parents if we need to stop. Again, on this or any production, there is no shot more important than the actors’ safety. But she assured us that this is a common occurrence and the fact is she’s right. It was a reminder of why we were all doing this in the first place. He was eventually cleaned up and able to do the last couple shots we had at that point. 

Rafi had her moments too. We took breaks often so she could sit down, we kept a fan on her almost constantly (this happened to be a 90+ degree day in the summer). She was committed to doing this because she wants so badly to help other kids with EB (again, she is just an unbelievable kid). My DP Chris Walters and I stepped aside at one point just to make absolutely sure we were shooting this in the most efficient painless way. You really don’t have those conversations on other shoots. So it was obviously hard emotionally, as well as logistically. We had to feed off of the kids’ bravery. If they’re okay with it, then we have to suck it up and be okay with it too. It wasn’t comfortable, but for them no single day is. And dealing with one day of shooting might help make all the days after a little more comfortable. We had to keep reminding ourselves of that. We all smelled like blood by the end of the day. Just tough all around. It’s really something that will stick with me forever.

How was the edit? Was there stuff that needed to be cut for content?

John Rea - Our editor Scott Galliard of Studio 6 quickly became personally involved in bringing this powerful message forward. There was a ton of very difficult footage to sift through and he knew that we had to get it right. He was instrumental in creating the :60 version from the mother’s point of view. That was content literally born in the edit room.

Chris Groban - John can speak to this better probably. As I mentioned earlier, there are parts to this disease that we just can’t show. There are takes that believe it or not are much more heartbreaking than anything in the edit. So the battle was how to give that punch to the gut we wanted without being grotesque.

Emily, did you get to see how the campaign was made?

Emily Rea - Yes. I was able to experience the entire creative process between working with Havas and the DEBRA foundation. From the initial storyboards to production to final edits, seeing the vision of each advert come to life was extremely rewarding. During the production, Rafi and Asa, the stars of the adverts, clearly moved every member of the creative team and production crew and the team’s efforts to make this content not only moving but galvanizing was extraordinary. Many of the team members even commented it was an honor to be a part of this most memorable and rewarding project.

What do you think of the adverts? What do you hope people will feel when they see them?

Emily Rea - I am beyond thrilled with the final adverts in their message, art direction and cohesiveness in covering DEBRA’s mission. Each individual advert presents why I first became involved with DEBRA foundation, to help the children, to honor their families’ love and dedication and to find a cure. These adverts not only reveal the pain these children endure each day but the passion, dedication and endless battles their parents face each minute of each day to ease their children’s pain and find a cure. I hope people who see these adverts want to take action and help these brave little children heal and enjoy a long, pain-free and happy life. 

We understand the films were premiered at an event at the Guggenheim. How did that come about? What was the reaction?

John Rea - Every year, Debra has a very well-promoted fundraiser. And for the first time, it was being held at the rotunda of the Guggenheim. Brett felt it was a great opportunity to share the new assets we’d created to help the attendees see what the Debra Organization had in mind for raising awareness in the months and years ahead. The crowd’s reaction was quite emotional. Looking around I saw a lot of tears. It was a powerful experience.

Chris Groban - That was a great honor and I thank Brett for letting us be a part of that event. We all talked about it beforehand sort of wondering what people would think. You know it’s a fancy affair. It’s a great cause of course but it’s also a celebration of the work done. We honestly weren’t sure if people would just be drinking and enjoying themselves too much to care. When the ads played though, the room went quiet. After the last one played I looked around and saw people walking by fast wiping their eyes. I think it really had an impact, and that was such a relief. They raised a lot of money that night and it’s just a fantastic feeling to think we helped in some way.

What’s happening with the films? Are there plans to do more with DEBRA?

John Rea - The spots were originally intended for pre-roll and to be featured on their website. Havas Media asked a number of networks if they’d help give airtime. To date, the Discovery Channel has donated time. There will be web banners as well.

What do you hope audiences will take away from the films? How much are you keeping in contact with the charity and kids?

Chris Groban - I hope people are as angry as I am about it. And that’s the word for me, angry. It’s just not fair what these kids go through. And it’s a roll of the dice. If anyone hopes to have kids someday as I do, then this disease already affects you. This could be your life too. I hope people see their own kids in this and are moved to contribute. The great part about giving now is that they are really on the edge of having viable treatments. That extra bit of fundraising might just gain the advantage on this disease.

I consider Brett and Jacki friends and still keep in touch. I had such a great time seeing Rafi and Asa at the Guggenheim event, and I think I will be involved in some way for a long time. Usually when you shoot a job, you’re involved for a couple months maybe, you wrap and then it’s on to the next thing. This is the first and only time that I just couldn’t shake it. It’s a part of me now.

In fact, when we wrapped and were putting gear away, Rafi told me she had the perfect idea to finish the commercial, which was for her to paint a butterfly. I told her that’s a great idea, but we had already put everything on the trucks, so I sat with her, pulled my phone out and filmed her painting. I’ll never forget the smile on her face as she did this. She painted me a butterfly as promised along with a note that said ‘thank you for helping cure EB’. That painting hangs on my fridge and I see it every day. I never thought I’d hang someone else’s kid’s picture on my fridge, but that is a testament to the effect Rafi has had on me. 

Emily, after all of this we have to ask - did you get an A? We think you deserve it ;-)

Emily Rea - For my first science project for EB and DEBRA, I became a semi-finalist for the Broadcom Masters Science Competition and won first place medal in Nursing from the New Jersey Nursing Association. Honestly, thanks to DEBRA and all the EB children, I have a purpose and mission which goes beyond grades. I can only wish more high school and college students find a reason behind their learning which is more rewarding and motivating than a letter from a teacher. 

We understand the project was an emotional undertaking for everyone involved. What are your lasting thoughts? 

Chris Groban - This was certainly one of those jobs that helps you check your perspective. I really don’t get to have a bad day after this. When I need courage, I think of kids like Rafi and Asa. In fact I remind others of this too. It truly has become my benchmark for bravery. If a kid like Rafi can get up every day, go to school and paint her beautiful paintings, all while suffering without pause, then you can get through your hard day. You don’t get to complain. I’m inspired every day by kids like Rafi and Asa, and I’ll continue to do everything I can until a day comes when they get to have a day like we do.

John Rea - Taking on a project like this would not be possible without the selfless giving from the management at Havas Worldwide and Tonic, and the people at AtSwim. I watched everyone who was tapped to work on this quickly become emotionally involved and just continue to elevate their levels of involvement. It was an incredible, incredible project to be a part of —unforgettable.