Research Achievements

A task that seemed daunting 20 years ago – to change the world for patients diagnosed with juvenile myositis – is now within our reach. Children diagnosed with juvenile myositis today are doing better than at any other time in history.  

Thanks to your support, we have made crucial research investments that are resulting in better outcomes for patients, including:

  • Reducing diagnosis time by 75%, from 12 months to less than three months
  • Improving care and treatment protocols to help kids get the best care
  • Investing in research and partnerships to advance new treatments, such as rituximab, abatacept, and others.
     
    And this is just the beginning.  
     
    As we look to the future, we remain laser-focused on:
  • Accelerating scientific discovery to better understand juvenile myositis so we can better treat it and one day prevent it
  • Expediting the development of new and repurposed treatments so patients have the most effective treatments without the devastating side effects
  • Helping patients get the best possible care
  • Investing in novel new approaches to the disease, including therapies at the genetic level that we hope could one day lead to long-term remission
     

One critical immediate goal is to expedite the availability of new treatments. Today, juvenile myositis is generally treated with drugs that broadly shut down the immune system, largely chemotherapy,and corticosteroids. These treatments can be quite effective, but they also block the immune responses necessary to fight off viruses and germs. This means there are a lot of side effects to these treatments. That is why we are investing in alternative approaches: to control the parts of the immune system that are not working correctly, while leaving the rest of the immune system functioning. We hope this will allow children to conquer juvenile myositis while living their best lives.
 
We could not accomplish any of this without you – our friends and families.
 
To learn more about your impact, we invite you to review our Impact Report here.

2025 Family Conference Finding Hope

Erin and Madi’s Story: Finding Hope at the Cure JM Family Conference

In February 2023, Erin Hicks and her daughter Madi faced a life-altering moment. After a visit to the National Institutes of Health in Seattle, Madi, a vibrant 12-year-old soccer player from Kansas City, Missouri, was diagnosed with juvenile dermatomyositis (JDM). “We walked out feeling overwhelmed and lost,” Erin recalls. Research fueled panic as Madi’s condition worsened, her energy fading on the soccer field. Hope was slipping away.

Volunteer Spotlight- Kristine Alderfer

Kristine has been involved in Cure JM through volunteer roles for many years, and her involvement has become a family affair, as her daughter Katherine is a patient advocate for others with the disease.

IVIG: What Families Need to Know

Learn about IVIG (immunoglobulin therapy administered by vein). This session features Dr. Fatma Dedeoglu of Boston Children’s Hospital, Huub Kreuwel PhD, of Octapharma Plasma, and patient advocate, Michelle Vogel, of CSI Pharmacy.

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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