Less than a year after her son's diagnosis, Marissa Penrod founded Team Joseph in 2008 to advocate on behalf of and fund research to cure Duchenne muscular dystrophy. After being selected as Dance Marathon 2014's primary beneficiary, Penrod and Team Joseph are preparing to increase their efforts. NBN spoke with Penrod before her speech about her DM experience.
How are you feeling right now? How much sleep have you gotten?
I feel great. I’m a little physically tired but emotionally, I’m doing really well. This is an amazing event and every minute of it is filled with energy and a lot of love for Joseph and Team Joseph and the cause.
Sleep? I’m not sure I know how to spell sleep anymore. I’ve had about three hours of sleep in the last couple of days, but that’s fine. This isn’t something we have to do every day. This is a short-term sacrifice for a really long-term benefit, so it’s good.
What’s it like to see your son and your organization be the focal point of an event like DM?
It’s a little bit surreal. I find myself still shaking my head in shock that we were chosen as a beneficiary because it’s such a grueling, long process. Now that the event is already here and we’re halfway through it right now. It’s a surreal experience. It’s fun, it’s exhausting, it’s filled with hope. It’s like having an entire army of people who believe in your cause fight for you and it’s indescribable.
Did anything surprise you this weekend?
I’ve spent a lot of time on-campus in the last nine months, and I’ve tried to be accessible to student groups and fundraising teams who wanted to talk with me or meet Joseph. So I thought we were really putting ourselves out there doing everything we could to tell the Duchenne story. But I think I am still surprised in the moment at how many dancers seem to truly understand why they’re dancing and what they’re dancing for. That gives me so much hope, and this isn’t just about thirty hours of dancing. This is about a cause. This is about saving lives. This is about changing the course of a devastating disease that, up until now, there has not been any treatment for. The surprise for me has been a pleasant one, everybody really truly cares, and they want to understand why they’re dancing.
It’s been almost a year since Team Joseph was chosen as this year’s beneficiary. How are you and Team Joseph preparing to use the donation you will receive at the end of DM?
One of the things we’re looking at is that we have a couple of research projects that we already support that are in the middle stages. What we’ll be able to do is complete funding for them and move them along faster. We’re going to support a project called Halo Therapeutics. It’s a promising new therapy that is in clinical trial.
We’re supporting a project at the University of Washington called Relaxin. We want to move that along really quickly; our ultimate goal is to get that in clinical trial. Those are just a couple of examples.
One of the promises we made to the DM committee is that we wanted to keep some of the money here in the Chicago area. What we will do is we’ll launch the Family Assistance Program, where we can help a family with expenses directly related to having a kid with Duchenne. We’ll work here with some physicians here in the city and we’re going to launch that this summer. We’re excited to be able to help.
If you were dancing in the tent, what’s the song you would want to hear to motivate you and get you dancing?
I was just commenting to someone that I don’t think I’ve heard enough Michael Jackson playing in the tent. So I would want anything from Michael Jackson because I think that anyone will dance to that.