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Personal touch: Family’s story drives home impact of research

May. 9, 2013, 8:54 AM

Terry Marlin talks to his boys Jonah, 9, right, and Emory, 6, both of whom have Duchenne muscular dystrophy, before telling his family’s story to a group of Vanderbilt graduate students and postdoctoral fellows. (photo by John Russell)

For 30 minutes Tuesday, Terry Marlin, father of two young boys with Duchenne muscular dystrophy, was the professor, telling his story to a group of Vanderbilt University graduate students and postdoctoral fellows.

“We’re in a race against time and money,” said Marlin, a Dickson County businessman who with his wife Sonya set up their own foundation in 2010 to support research at Vanderbilt. “I feel like somebody in this room can make a difference.”

In just three years, the Fight DMD foundation has raised $240,000, enough to jumpstart the first cardiac research program on Duchenne muscular dystrophy at Vanderbilt, focused on how the disease leads to heart failure.

The research has attracted additional funding from the American Heart Association.

Researchers are collaborating. Manuscripts are being written. “It’s a step forward,” said the boys’ cardiologist, Larry Markham, M.D., associate professor of Pediatrics and Medicine.
Tuesday night’s program, called a “Bedside to Bench” symposium, was organized by the three-year-old HHMI/VUMC Certificate Program in Molecular Medicine.

The symposium featured presentations on both the skeletal and cardiac manifestations of Duchenne muscular dystrophy.

The clinical enrichment program, jointly funded by the Howard Hughes Medical Institute and the Vanderbilt Clinical and Translational Scientist Development Program, is designed to “bring the clinic to the basic scientist,” said program director Mark de Caestecker, M.B.B.S., Ph.D., associate professor of Medicine, Cell & Developmental Biology.

Later this month, the program will award its first certificates to 12 graduate students and postdocs who have completed the three-year program.

The Marlin’s sons, Jonah, 9, and Emory, 6, did not speak during the event but in a sense they too were professors. Jonah, who lost the ability to walk at age 8, now uses a motorized wheelchair.

The genetic disorder, which affects only boys, causes progressive degeneration of all of the muscles of the body, including cardiac muscle.

That’s why Fight DMD is focused on heart research. “You can live without legs,” Terry Marlin said. “You can’t live without your heart.”

Marlin’s “lecture” hit a chord. “I always find it really helpful to see patients, actual face-to-face encounters with real people who are affected,” said Cody Wenthur, a second-year graduate student in Pharmacology.

“I have met with people who have psychiatric disorders, which is what I’m interested in,” Wenthur said. “When you see people struggling, and trying to find anything they can to help, it definitely gets you through.”

“I love these types of symposia, especially when we get to hear the story behind the patient and all the hard work they put in,” added Celestial Jones-Paris, a fourth-year graduate student Cellular & Molecular Pathology,

“I have a younger brother with type 1 diabetes,” said Chris Wilson, a second-year graduate student in Microbiology & Immunology. “I just want to understand how to communicate better to the general public … and raise awareness for research.”

For more information about the Certificate Program in Molecular Medicine go to Online application for the class of 2016 opens June 1, and the submission deadline is July 31.

For more information about the Fight DMD foundation, go to

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