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.

Alexandra’s Story

Alexandra grew up in Philadelphia. At eight years old, she was diagnosed with juvenile dermatomyositis. Her first symptom was pain in her cuticles whenever she

Balancing Work and Caregiving: Strategies for Working Parents of Children with Juvenile Myositis

Balancing Work and Caregiving: Strategies for Working Parents of Children with Juvenile Myositis

Balancing the demands of a career with the responsibilities of caregiving is a challenging task for any parent. For those with a child diagnosed with juvenile myositis (JM), a rare autoimmune disease affecting children, the challenge is heightened. Juggling work commitments while providing the necessary care and support for a child with JM can be taxing. In this article, we hope to provide you with a few effective strategies and insights to help working parents navigate this delicate balance.

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