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Visionary Funding, Visionary Research

Date: January 1, 2013


Myositis Center Co-Directors Sonye Danoff and Lisa Christopher-Stine are using a remarkable gift from Huayi and Siuling Zhang to gain ground on a rare condition for which research dollars are scarce.
Myositis Center Co-Directors Sonye Danoff and Lisa Christopher-Stine are using a remarkable gift from Huayi and Siuling Zhang to gain ground on a rare condition for which research dollars are scarce.

 

Research funding for myositis, an inflammatory disorder of the muscles caused by autoimmune diseases or medications, can sometimes be as rare as the disease itself. But with a gift from a grateful patient, Johns Hopkins Myositis Center investigators Sonye Danoff and Lisa Christopher-Stine can expand their efforts to better understand and treat the condition.

Huayi Zhang, Ph.D., and his wife, Siuling, have pledged $800,000 over four years to benefit research at the Myositis Center, making the gift in recognition and appreciation of their relationships with Christopher-Stine and Danoff. The Zhangs gave $300,000 to the Myositis Center last January. 

The funds are being incorporated in several ways. They are supporting Danoff, a pulmonologist and associate director of the center, in trying to identify genetic markers associated with the risk of developing interstitial lung disease (ILD), a group of conditions that injure the air sacs of the lungs and interfere with oxygen absorption. ILD affects some 30 percent to 60 percent of myositis patients.

“We’d like to be able to know up front what a patient’s risk will be,” says Danoff, whose goal is to compile blood and DNA markers into an index of ILD risk, akin to the commonly used Framingham Risk Score to estimate the chance of developing cardiovascular disease. “We also hope to identify new pathways that can be targeted for therapy. Some patients fail on current therapy, and we still don’t have a handle on why this occurs.”

The funding also allows for a research coordinator in their multidisciplinary clinic, which brings together the expertise of rheumatologists, neurologists and pulmonologists, as well as physical and occupational therapists and nutritionists.

In addition, says Christopher-Stine, a rheumatologist and co-director of the center, the funds support efforts to track antibodies from myositis patients’ blood samples collected during their first visit to the clinic and over time. By studying this, researchers can “determine patterns of disease in retrospect that we can’t always see at first,” or learn more about subtypes of myositis, she says. 

Myositis Center researchers already have made some inroads, such as finding a form of myositis caused by exposure to cholesterol-lowering statin medications. In some affected patients, stopping statin use reversed the condition, but in others it remained. “We’d like to tease that apart,” Christopher-Stine says.

“What Dr. Zhang recognizes is that this kind of funding allows for pilot data to garner larger federal grants,” she adds. “He is a risk taker.”

Zhang says two factors prompted him to support the center: “One, the center has more patients than most other clinics, and two, my personal experience with the doctors tells me that their knowledge is cutting-edge and they are actively engaged in research. So I thought it was a good bet.” 

 

 
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