40th Annual Dance Marathon to Benefit Muscular Dystrophy Research

By Summer Delaney and David Harris

EVANSTON, Ill. --- Northwestern University Dance Marathon (www.nudm.org) announced Team Joseph as its primary beneficiary Thursday for the 2014 year. Team Joseph’s mission is to aggressively fund cutting edge research to find a treatment or cure for Duchenne muscular dystrophy.

Formed around the fight of Joseph Penrod, now 10 years old, Team Joseph (www.teamjoseph.info) began with a mom who wouldn’t let her son be defined by his diagnosis of Duchenne. With the support of family, friends and an army of volunteers, it has evolved into the strong movement it is today.

NUDM executive co-chairs Anna Radoff and Josh Parish chose Team Joseph as a 2014 primary beneficiary finalist, and the executive board of 20 students selected the organization in a unanimous decision.

“The Team Joseph story is rousing and motivating, built around saving the life of an inspiring boy and children all over the world diagnosed with Duchenne,” Radoff said. “The energy and resources NUDM provides will move us closer to a cure for this devastating disease.”

“Team Joseph is incredibly proud to be selected as the primary beneficiary of NUDM 2014,” said Marissa Penrod, Team Joseph founder & CEO and Joseph’s mother. “We are thrilled that this partnership will bring added awareness and critical funding to Duchenne research, and will help us to leave an important legacy. The generosity and the compassion of Northwestern students, alumni and supporters will have a profound impact on Duchenne patients right here in Chicago and all over the world.”

Team Joseph, founded in 2008 and based in Detroit, is a tax exempt 501c3 that funds research focused on finding a treatment or cure for Duchenne and also works with families to provide financial assistance related to the overwhelming medical costs of caring for a child with Duchenne.

The organization supports a community around the nation, including the Chicago area. Dr. Nancy Kuntz, a neurologist who holds an appointment as associate professor of pediatrics and neurology at the Feinberg School of Medicine and is the director at the muscular dystrophy clinic at the Ann & Robert H. Lurie Children’s Hospital of Chicago, will work to connect NUDM to the local Duchenne community.

“Defeating Duchenne muscular dystrophy is an urgent cause,” Parish said. “As Team Joseph leaders shared with us, there is now real hope for a treatment or cure. There is the potential for this generation of boys to be the last to die of Duchenne -- or the first to survive.”

Duchenne muscular dystrophy is the most common degenerative genetic muscle disease in boys, affecting one out of every 3,500 boys. It is 100 percent fatal, and the life expectancy for those afflicted is in the early 20s. More than 99 percent of the almost 20,000 new cases each year are boys.

As most boys are growing stronger and gaining independence, boys with Duchenne are losing muscle function and mobility. Duchenne is caused by a flaw in the dystrophin gene, the largest gene in the human body. Dystrophin is responsible for protecting and repairing muscle damage. Children with Duchenne don’t have the protective benefits of dystrophin so their muscles are constantly under assault – breaking down and deteriorating, with no protective protein to rebuild them.

In its five-year history, Team Joseph has helped to successfully fund a number of forward-looking research initiatives, including those at the Dowling Lab at the University of Michigan, Phrixus Pharmaceuticals, the Children’s Hospital Oakland Research Center (CHORI), and University of Washington. The additional funds provided by NUDM will allow for expansion of these programs and will ultimately ensure a treatment or cure for Duchenne is found sooner. In addition, Team Joseph intends to initiate a family assistance program in the Chicagoland area to support families affected by Duchenne.

Northwestern University Dance Marathon is celebrating its 40th anniversary. This is the first time in its history NUDM is benefiting an organization dedicated to fighting Duchenne.

Northwestern University Dance Marathon is also proud to support the Evanston Community Foundation as its secondary beneficiary for the 17th consecutive year. The Evanston Community Foundation is an independent, tax-exempt public charity that focuses on Evanston and its surrounding area. The Foundation's multiple programs give it a space to help Evanston meet a wide variety of local needs, from financial services for individual or family interests to endowment funds for Evanston’s future.

Northwestern University Dance Marathon 2014 will be held March 7-9.