An Interview with OttoTHON’s Executive Director

Graphics by Anika Dua

Just in case you’ve been living under a rock and haven't heard yet, OttoTHON is SU's 12-hour dance marathon held on campus to support the children from Upstate Golisano Children's Hospital.

This week, we got to talk to Grace Brashears, the executive director of OttoTHON and ask her about the organization and its mission. 

Jerk: What is the purpose behind OttoTHON?

Grace: OttoTHON is part of a countrywide movement called Dance Marathon that works with Children Miracle Network. We work to serve our local Children Miracle Network children's hospital, which is in upstate Golisano. Our organization works year-round to raise funds, awareness and student support for families and children who are currently seeking treatment at the hospital or who have previously undergone treatment at the hospital. 100% of all our fundraising goes directly to the hospital and stays local, which I think is cool. And all of it leads to our twelve-hour dance marathon event in the spring, which is like the big thing we're known for. 

Jerk: Tell me more about the dance marathon event in the spring.

Grace: The event is usually in Goldstein Auditorium in the Schine Student Center. You come for 12 hours, and every hour is a theme. Families and kids from the hospital come, and one family will share their story every hour. We do dance, obviously, but you don't have to know how to dance to be there because it's just silly dancing. We have food, play games, do crafts and fundraising. We even have student performances. During the event, too, we led a parade to the hospital because something unique with Syracuse OttoTHON is that our hospital is right across the street. So halfway through the event we walk over to the hospital and do something called a morale dance, which is like a 1 minute, really easy dance that our morale team has made up. So we go to the hospital and perform that dance for them outside the hospital. So the kids who couldn't come to the event can still see the support they're getting. That's my favorite part of the event. I think it's really special.

Jerk: Who are the children that you're supporting? 

 Grace: We have 12 children who are called our miracle children. These are specific families who have been treated or are currently being treated at Upstate Golisano, and who have been willing enough to be direct partners with us. So they're the ones who come and speak at their event, they're the ones who are sharing their story. They range in age and conditions and all of that. One of our kids seeking treatment is Lennox, who just turned four. He has Dravet syndrome and severe myoclonic epilepsy, leading to a life expectancy of under ten. His family really struggles with that. So having the opportunity to support them is important. He's a case where he's currently in the hospital, currently seeking treatment, but then we have some miracle kids who went in for one surgery that may have saved their life, but now they're doing great, and they just go back for checkups. It's hard to picture the impact that we have made. But we have a room in the hospital named after OttoTHON that they were able to have because of the funds we raised.

Jerk: What inspired the creation of OttoTHON?

Grace: Jane Lynch started the chapter at SU in 2014. The initial creation of the dance marathon as a whole goes off of a kid whose name is Ryan White. He was diagnosed with AIDS in the 1990s. He was enrolled to be going to school at Indiana University to be a first year there. But he passed away before he got there due to complications of his condition. His best friend created this movement and came up with the idea to have this huge event just in support and fundraising of the Children's Hospital and towards his condition and have as many college students as possible having the time of their lives in support of something. So our theme for OttoTHON last year was Party for a Purpose, and that's genuinely what a dance marathon is as a whole. It's just like a huge, big dance party. You're playing games, you're having fun in support of all of these kids who need help. So it started with that school, and then a few other schools joined the movement after that, and then it became like a countrywide thing. I've never met Jane personally, but I believe she wanted to be a part of the movement here in Syracuse. Especially since we have such a big school and everyone who goes to school here, we are very privileged to be healthy, to be at university and to attend classes. So many kids don't have the opportunity and would do anything to be able to be in our place. So showing support for them is crucial. So I believe that would be what her inspiration behind it was.

Jerk: What is your OttoTHON why? What made you join the organization? 

Grace: So I have two reasons. But my why as a whole is that I don't want any child or family to feel like they are walking the path of pediatric illness alone. In our healthcare system today, many things fall through the cracks when it comes to having accessibility and supporting the families and the children who walk that path. For example, Upstate Galasano serves up to 20 counties in the area, and they're one of the only level one trauma centers in the area, meaning that there are people who have to spend two to three plus hours just to seek treatment for their medical condition. So that's so much gas money, lodging money, finding a place to stay, spending money on laundry, all of those prices add up so quickly, and it becomes really expensive. And there are not always things in place to help cover that cost. Our funding, however, goes towards things like that. And even as a whole, fighting any medical illness, whether it's pediatric or not, is scary. And if you don't necessarily have the support that can feel isolating, not only for that child, but also that parent who has to try and figure everything out. Helping them know that they are not alone is what my why is. I don't want them to fight alone. 

Jerk: And your second why? 

Grace: My high school was tiny. I'm from a really small town in Michigan. I graduated with like 120 people. Everyone knew everybody from 7th grade until high school. In 2016 especially, we had a lot of incidents at my school where several members of the staff and the students suddenly passed away, which was terrible. And since our community is so small and so close-knit, that was very impactful for everybody. And everyone was kind of just in the how do we help phase. So, when I got to high school, I was appointed to our school student council. All of my cousins were already in college and did a dance marathon that supported those children's hospitals. And all the students who had either been injured or passed away had all been going to the same children's hospital about 40 minutes from our town. So, I initially wanted to start that to raise some support for those families and show our greater school area that we can rally together and do something for these students and for these families to show support. So I started my high school's dance marathon because you can do it in high school as well. While I was planning it, I was personally diagnosed with myoclonic juvenile epilepsy, which is a much more mild form of epilepsy than many other people have. So I ended up having to be treated at that same hospital, and during that time, I was able to see all of the services that dance marathons were able to fund at the hospital and kind of got a first perspective of it.

Jerk: How do you feel being a part of OttoTHON? 

Grace: It's one of the best things I've ever done in my life. It's like my entire life, which I love. I wouldn't have it any other way, but it's just such significant work, and it's something that's never going to stop being essential because unfortunately, there's never going to stop being a need for this stuff. One day we hope that there will be a cure for everything, that the healthcare system will be perfect, and there will be no financial or accessibility issues. But how things look right now, that won't be a reality for a long time, probably never in our lifetime. So we have to support in ways that we know how.

Jerk: Apart from the Dance marathon in the spring, how else can we support OttoTHON? 

Grace: We're trying to have smaller events this year, but we'll do tabling a lot. Last week, we had a candlelight vigil for all of the children in the hospital who have sadly passed away. Contributing financially isn't necessarily in everybody's cards. So just showing up and supporting those things, I think, would be great. Keeping up with our social media is the best way, as you'll see what's going on and what you can participate in.

You can follow OttoTHON on Instagram @ottothon and donate here.