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.

The Potential of JAKs in Fighting JM

In our June 2024 “Ask the Doc” Town Hall, Dr. Julie Paik joins in a Q&A session to shed light on what JAK inhibitors are, how they work in JM, when parents might consider discussing JAKs as a treatment option, and the pros and cons of their use.

The Potential of CAR-T Therapy in Myositis.

The Very Real Potential of CAR-T Therapy in Myositis

We expected to hear promising news about the potential for CAR-T therapy to treat myositis at the Global Conference on Myositis (GCOM).

What we heard was more than promising—it was astounding.

What if I told you that there was a therapy that would “reset” the immune system—virtually eliminating the autoimmune response in myositis that causes inflammation, pain, muscle weakness, and other JM conditions of which we are all too familiar.

Helping Parents & Kids When They Express High Emotional Distress

This expert-led presentation is for parents about how to help their kids and themselves when their kids express high levels of emotional distress. Our presenters will talk about ways parents can calm themselves, share tips for talking to kids with age-appropriate information, and know when to find help from a professional. There will be a Q&A session immediately following the presentation.

Join Cure JM

Membership is free and we’ll connect you with a network of support, encouragement, and resources.

Cure JM supports families, patients, and the juvenile myositis research community.

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