‘The miracle is Joseph’: Dance Marathon raises more than $1.3 million in hopes of Duchenne cure


Annabel Edwards/Daily Senior Staffer

Marissa Penrod (right), the founder of Team Joseph, hugs Dance Marathon executive co-chair Anna Radoff during Block 10. Penrod expressed her gratitude toward DM for choosing her cause.

Paulina Firozi, Editor in Chief

When Marissa Penrod got up on stage during the final block of Dance Marathon 2014 and began talking to the crowd about her son, it was the first time in almost 28 hours the tent reached something close to silence.

More than 1,000 dancers, DM staff and NU and Evanston community members stood mesmerized as the founder of DM’s primary beneficiary, Team Joseph, told the story that had brought her to that stage.

“So here we are. For nine months and for the past 28 hours you have focused on defeating Duchenne, and on raising funds and on the team in Team Joseph,” she said. “But now for a few minutes we’re focusing on the little boy who is the reason that we’re here.”

She told the crowd how when Joseph was diagnosed with Duchenne muscular dystrophy, she began to kneel at his bed every night, placing her hands on his legs and praying for a cure, for a miracle.

“And one night as I did this it came to me so clearly and so profoundly,” she said. “I had been praying for a miracle but the miracle had been here all along. … The miracle is Joseph.”

Throughout the weekend, as fundraising milestones were announced by DM’s finance committee, the previous year’s totals were surpassed nearly every time. Still, when it was revealed DM had raised $1,385,273, a record total and more than $150,000 greater than 2013’s, it was met with screams of shock and awe. It was the fourth consecutive year NU’s largest philanthropy had broken the million-dollar mark.

Teary-eyed, executive co-chair Anna Radoff handed a check for $931,289.21 to Penrod. The Evanston Community Foundation, in its 17th year as DM’s secondary beneficiary, was presented with $103,476.58. It was the first time in DM’s history cash donations for the two beneficiaries exceeded $1 million.

In May, when it was announced Team Joseph — the Detroit-based organization that aims to find a treatment or cure for Duchenne — would be the primary beneficiary, DM spokeswoman Summer Delaney said there was a compelling reason, an urgency, that drew the committee to the organization.

“This generation of boys that have Duchenne will either be the last to die of it or the first to survive with it,” the Medill junior said at the time. “Despite Duchenne being 100 percent fatal and a somber topic, there is hope for the future.”

Months later, seeing 11-year-old Joseph Penrod dance on the stage with the DM executive committee, and meeting the hero families, dancers were reminded of that urgency.

Peter Ulrich, who acted as the local liaison between DM and Team Joseph, has been an active participant in Penrod’s efforts since near their inception. Ulrich said he met the family in 2000 in Michigan because his youngest son went to preschool with Penrod’s daughter, Katie Penrod.

“When you have a personal relationship and something as dramatic as Duchenne touches their family,” he said, “you ask, ‘What can I do to help?”

Like many others, Ulrich touched on the importance of the cause and of spreading awareness rather than focusing on a monetary goal.

Though he said “money is critical” when it comes to funding research for an eventual treatment, the ability to educate the public about Duchenne was much more valuable.

“At the end of the day, what we’ve done … we’ve been able to deliver the Duchenne message to numbers of people that we never imagined,” he said. “You have 1,500, plus or minus, students in this tent. That’s 1,500 families. That’s 1,500 families with friends and cousins. Attention is our best friend and hope is the currency that keeps us going.”

That “Duchenne message” was heard loud and clear on campus over the weekend, and even made its way to the White House. In the very first block, dancers were surprised with a video message from President Barack Obama.

“Your energy and enthusiasm is going to do a lot of good for a lot of people,” Obama said. “Thank you for making a difference to the life of your community and your country.”

But even though Team Joseph is now nearly $1 million closer to funding research for a treatment or cure, work remains to be done in Washington, D.C., to find the support to accelerate the cause.

Though researchers have developed a therapy targeting specific gene mutations that may treat a small percentage of boys with Duchenne, the treatment has yet to be approved by the Food and Drug Administration. The FDA Safety and Innovation Act, passed by Congress in 2012, would allow the FDA to fast-track approval of treatments for rare diseases with “unmet medical need.” Duchenne fits this category, yet approval remains delayed.

“So the big question right now is why, why is the FDA not granting accelerated approval to this when it has shown to be efficacious and safe?” Penrod told The Daily last week. “We just don’t have time to wait.”

But both Penrod and DM members believe there is hope.

Exective co-chair Josh Parish said he was reminded throughout the weekend of a story Penrod always told.

“When Joseph was diagnosed, her daughter asked ‘Are people going to treat us differently?’ and she told her, ‘Yeah, absolutely. You’re going to see the absolute good come out in everyone you interact with,’” said Parish, a SESP senior. “’The more I think about that, the more it’s been true this year. … The dancers are incredible, but it’s so inspiring the way strangers help you and come into your life when you do something like this, just because they can.”

Radoff, Parish’s fellow co-chair said the continued effort from the rest of the organization kept her motivated.

“I’m just so consistently impressed by my peers,” the Weinberg senior said. “On the exec board, on committees, people we’ve reached out to because we knew they could help us in some way. People are just so willing to help. … That sense of giving and selflessness is so incredible and so wonderful for this entire student body.”

Throughout the weekend, Penrod talked about the idea behind the Team Joseph name, about needing an army to fight against Duchenne. During Block 10, she thanked Northwestern for filling that role and embarking on a journey that could save her son’s life.

“You have taught me that I can be afraid, that I can be terrified and still find hope and comfort in a tent full of a thousand, crazy Wildcats,” Penrod said.

The Penrods found their army in more than 1,000 students dancing for Joseph for 30 straight hours. It was an army that was created as soon as the DM executive board chose Team Joseph out of more than 75 applicants last year. Penrod said over the course of nine months, she was inspired by the effort the board put in on behalf of the organization.

“If I could clone the Dance Marathon executive committee,” she told The Daily on Friday, “we could make the world a really better place.”

Relive our 30-hour DM coverage here.

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