“There is one reason that 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 that 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 around the world.
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.
Today we 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. Today, through training and physician education, more doctors than ever before can provide experienced, quality care for your child.
Cure JM is laser-focused on the development of new or repurposed drugs that will be more effective than corticosteroids (with all of the debilitating side effects) in treating JM. 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.