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.

Rebecca Karsten, Why I Fundraise, Ellory, Giving Tuesday 2024

Why I Fundraise

Rebecca Karsten– “Hello! Welcome to a wonderful community that even though we never wanted to join; we are now so happy to be part of.

Walking Strong, Empowered by unity

Walking Strong – Empowered by Unity

Like other teens new to the JM journey, Catie Beth Caldwell and Madi Cook were two individuals who felt alone at the beginning of their journeys. Catie Beth was diagnosed just before the Covid-19 pandemic took hold of the world as we knew it. With this came feelings of isolation and loneliness. These emotions were commonplace for many teens but were only compounded by teens new to a rare disease diagnosis. These first years of the “new normal” were difficult to navigate.

The Carpenters Lemons to Lemonade- web

The Carpenters turn Lemons to Lemonade!

The Carpenter family hopes their efforts will raise awareness for Cure JM and bring hope to families like theirs.

The community went above and beyond in showing their support for the lemonade stand.

The 1000 cups with lids the Carpenters ordered quickly cleared out as more and more lemonade was sold!

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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