Q&A with Danny Did Executive Director Tom Stanton

    This weekend, hundreds of students will dance for 30 consecutive hours for the benefit of the Danny Did Foundation, a family-based charity aimed at increaseing research and awareness for children with epilepsy and their families. Back in December, North by Northwestern sat down with Danny Did executive director Tom Stanton. Stanton was also the uncle of Danny Stanton, the 4-year-old boy who served as the inspiration for the foundation.

    When did the idea for Danny Did first get started?

    The idea time the idea came to light a few weeks after Danny died. I remember on Christmas Eve of that year an AP reporter was at Danny’s house talking to his parents asking how they were moving forward, and what his legacy might be. That was the first time the notion of creating a family foundation was raised. I remember wondering where this could lead, and only a few weeks after that we started in the form of a Facebook page. That was on Jan. 4, 2010. We posted a picture of Danny, and we had about 1,000 likes within 24 hours, and it grew and grew from there.

    Who came up for the idea of naming the foundation “Danny Did?”

    The name comes from the last line of Danny’s obituary [“Please go and enjoy your life. Danny did.”]. I don’t know if we had the foresight to know how impactful that would be on to many people, but it gets to the crux of what we’re all about: enjoying each day and being hopeful. It’s about love and being able to step back from your daily life to enjoy the people you’re around.

    How did you get connected to the foundation? What kind of experience had you had in this kind of field?

    Initially there was no full-time staff. We were just taking it week by week, eventually going through process of forming a board of directors, and bylaws, and all the systematic steps to starting a 501(c)(3) charity. I had a lot of experience working for non-profits, and I’m a board member of Special Children’s Charities, which does fundraising for special Olympics programs. So I had background on the mechanics involved in charities, and I studied not-for-profit management in my master’s program at DePaul. My background was in journalism, and from there I segued to public relations. For a long time I was the spokesman for the Cook County State’s Attorney office. But we all felt we had the experience to help. We were all pitching in at the beginning to try to get the pieces in place, and we focused on the idea that we always wanted to start and end on Danny’s story. That’s what people typically remember about the site: Danny’s face, Danny’s smile, the story behind his life. We were cognizant to keep that present.

    Where exactly does contributed money go? What does it buy?

    The No. 1 thing we want people to know about what we do is that we want to help families in practical ways. The money we raise goes to help individual families, buy monitors that monitor seizure activity. It’s a very personal gift, and it can be very difference-making. Many people have said they found the gift life-saving. People have said they found their children unresponsive after their child’s seizure this tracked on a monitor. We also try to fund research in hospital settings, but the bulk of the money goes to families that need help, a lot of whom spend a lot of money on medicine, and when it comes to technological assistance, they often just can’t afford it. I hope the students [involved in Dance Marathon] think about the faces of kids who often have better or longer lives because of the fundraising they’re doing.

    What’s the effect of using Danny himself as the face of the campaign? How does that change the dynamic of fundraising?

    I think it helps to personalize this sort of epilepsy. It gives a face to staggering statistics. We can say that [over 2 million people] in the United States have epilepsy, but sudden unexpected death in epilepsy is a primary focus where we want to raise awareness. If we you have cancer, the doctor gives you a straight prognosis, but that doesn’t happen with epilepsy. SUDEP is not often talked about among neurologists, and we want to bring it more into the conversation. We can tell people that, but when we show Danny’s face it resonates differently than stats or bullet points or talking points. You can make a connection with your own children or your own family, and engenders a form of support and empathy that’s really important for any organization to have. It helps build an audience who cares.

    What needs to change about the way children are diagnosed and treated for epilepsy? What is Danny Did doing about this?

    The primary thing we do to try to do is helping include SUDEP in that conversation – having the doctor sit down and talk about SUDEP in the context of other risks. People who have epilepsy need to know that driving can be very dangerous, or swimming or bathing or biking or whatever it may be that puts you at risk. People with epilepsy need to know that head trauma is a common byproduct, and those things are regularly talked about, but SUDEP is not part of that conversation. What we hear from families is that they want to know about it, and they want to be educated about it. So we spend time on panels and at conferences, and we talk to doctors and tell them that it’s important for people to hear this from them. We can advocate it all we want, but it means a lot more when it comes from a doctor. It brings a greater amount of trust, a sense of “doctor knows best.”

    Has a lot changed in the way of epilepsy treatment since the foundation was started?

    There have been changes on several different fronts. In terms of SUDEP the conversation has been heightened, and discussion of SUDEP is now a lot more common at conferences. That was a starting point, but it’s really gained traction. It’s not just a trend, but now it’s become a larger part of the conversation about epilepsy in general. This is something advocacy groups need to be involved in and families need to know about. What’s important for us now is turning that awareness into action, and having more doctors talking about it. Now they know this is a real risk, and we hope they’ll change their standard of care and continue to talk about it. That’s a transition taking place, and it’s important we keep pushing to make sure that actually happens. It all doesn’t mean much if it doesn’t make its way to families and patients. In terms of technology, we have a long way to go in terms of getting families all the resources they need. But I think the technology and device front is getting up to speed in terms of what’s covered, what’s affordable, and what’s FDA-approved. But it’s not where it needs to be.

    How did you first get in touch with Dance Marathon? When did they take an interest in Danny Did?

    Mike [Stanton] went to Northwestern, and he always stayed in touch with University and has always been aware of a lot of its programs and what they do as a community. He was the first to let me know about DM. So we educated ourselves on its history and how it’s grown, and we were struck by the fact that in its first three years of existence, it was benefiting the American Epilepsy Foundation. It was huge in epilepsy awareness, and we felt like there was that connection there, and it was worth making a go at it. So we first applied to be the beneficiary for the 2012 Dance Marathon, and we made it through several stages and learned a lot about it. Having gone through that helped us understand better for this year. It was just one of those collaborations that seemed very natural. We’ve always tried to engage young people, because we know that if you want to change the dynamic with something, you have to do it with the new generation. A lot of the problems we deal with are generational – they haven’t been something normally brought up in past generations – and young people forming ideas are a big audience for us.

    How did the idea of students dancing for 30 hours strike you?

    I thought it was an amazing concept that only college students could probably pull off. I remember thinking, “How could they possibly sustain energy for that long?” I’ve watched videos from years past, and at the reveal, when they told us we’d be the beneficiary, we got a sense of the way they do things, which is all focused around fun. They brought us in and asked us questions like they were still interviewing us, and at the end they said, “One last question: Do you want to be our 2013 beneficiary?” It was surprising and crazy, and set the tone for the kind of enthusiastic process we’ve seen from them so far.

    Why is a crazy, dance-centric event a good fit for Danny Did?

    A dancing event is absolutely appropriate. One of the videos we posted on our site is from the day Danny’s family got a new computer. All of them got together, and they figured out how to put on a music program, and an Aerosmith song came on and Danny danced through the entire song. We like to share that video a lot because it’s representative of Danny’s spirit and his love of fun. So the slogan “Dance for Danny” is an incredible fit. He loved to dance, and he loved to embrace fun and embrace life, so an event like this is right up his alley.

    How does it feel knowing that so much effort is going into preventing children all over the world from going through what Danny did?

    It feels great. It feels like we have a whole other department for our organization. Looking at all of the DM committees, we have 22 educated and energetic people who care about our cause just as much as we do. And coming from a small family foundation, it feels so comforting and empowering to see all these people now becoming advocates for us. It’s an incredible feeling seeing our group quadruple in size, and knowing that all of Northwestern is helping us leave a real legacy for epilepsy research support for the families of epileptic children.


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