The Importance of Research

Researcher discusses chart on wall.

“There is one reason my daughter is alive and close to remission today,” a JM mom recently wrote to Cure JM in a letter of thanks. “That reason is research.”

We could not have said it better ourselves.

When Cure JM was founded 20 years ago, little was known about juvenile myositis—what caused it or how to treat it effectively. There were few experts among pediatric rheumatologists, and because JM is a rare disease many doctors and pediatricians had not heard of, its symptoms were often misdiagnosed and treatments delayed.

Before researchers discovered that corticosteroids could effectively suppress an overactive immune response in JM, one in four affected children would die from the disease. Today, the mortality rate is below 3%. This is why research is so important. What we learn—what doctors learn—from Cure JM-funded research has saved lives, improved treatments, and increased access to quality experienced care throughout the U.S. and worldwide.

Today, because of our research, we know more about how to treat this diverse and complex disease than ever before. We know, for example, that children have different autoantibodies that can often tell us something about the course of the disease and how it might affect muscles, skin and other organs in the body, such as the heart and lungs.

We now have standard measurements to evaluate lab results, which has led to the creation of widely-used treatment protocols with more predictable outcomes, reducing the guesswork around clinical care.

Through training and physician education, more doctors than ever before can provide experienced, quality care for your JM child.

Cure JM is laser-focused on developing new or repurposed drugs that will be more effective than corticosteroids in treating JM without debilitating side effects. These new drugs have been or will soon be in clinical trials to prove safety and efficacy as juvenile myositis therapies.

Cure JM-funded research is the reason for great optimism, as today we know that most JM kids will prevail in their battle with the disease and lead full, healthy, happy lives free from JM.

Family News

Family News

The Cure JM Foundation produces a monthly newsletter with the latest news and updates about Juvenile Myositis. Please click to read past issues of the Family News.

Community Advisory Board

Cure JM’s Community Advisory Board plays a vital role in representing JM families from diverse backgrounds to help support this cutting edge research project. Cure JM CAB members are the link between the greater JM community and the project’s research team, working together to ensure that the needs of the entire JM community are understood and addressed.

Health Insurance Tips and Links

Health Insurance Tips and Links

Tips and links for dealing with insurance claims, denials and appeals, making phone calls, changes in health care law, help with medical bills, and more.

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