As we start Cure JM’s 20th year, I am so excited to announce that we are joining the Cure JM National Walk Strong to Cure JM event on July 2, 2023.
I am also so honored to serve as the Chair of Cure JM’s Board of Directors and I am grateful to you for making our extraordinary progress possible for kids battling JM. I am filled with optimism for the future of children living with juvenile myositis as our doctors and researchers work tirelessly in the quest for better treatments and a cure for JM.
Twenty years ago, the outcomes for a child diagnosed with juvenile myositis were bleak. The disease was like a cancer, spreading and rendering children immobile by attacking muscle and for many, the heart and lungs. Thankfully, those days are largely behind us due to the work of Cure JM and the many pioneering researchers we supported in those earlier years. Indeed, today we stand on the shoulders of those early visionaries who developed the life-saving treatments we have today.
And while life-saving, current treatments are imperfect and have complications and side effects of their own. We still have much work ahead of us to develop better drugs and treatments and improve medical care and outcomes for our children.
I would be honored if you would consider supporting our family’s goal to raise $25,000 in the National Walk Strong to Cure JM event to advance research:
Tax-deductible gifts can be made:
- Online - click the "DONATE NOW" button on this page
- Checks can be made out to Cure JM and mailed to Cure JM, P.O. Box 45768, Baltimore, MD 21297 with “Houston” in the memo.
- For other ways to give, contact Shannon.Malloy@curejm.org or by cell at 512-709-1905.
First, with your support we will be able to identify and test, through clinical trials, newer and better drugs to treat JM. As I mentioned, there are several drugs in the pipeline leading to clinical trials in JM. Our job is to do everything possible to encourage and accelerate these trials. Important roles for Cure JM and our doctors are to assist with trial design, lead patient recruitment (clinical trials require a sufficient number of patients), and provide funding as needed, often through our Centers of Excellence. Thanks to your support, we are making great progress. In 2022, a clinical trial for the drug abatacept was completed at Cure JM’s Center of Excellence at George Washington University, and the drug was shown to be effective in treating juvenile myositis. We are making progress but there is still much to do.
In 2023, we expect enrollment to begin on a second clinical trial at the National Institutes of Health for another drug and are hopeful that the FDA will approve Cure JM’s clinical trial plan for yet a third drug—an alternate steroid—for a trial led by our Center of Excellence at Duke University. We also have an additional 5-6 clinical trials in development, that we will be able to move forward as quickly as resources allow.
As you know, most funding for these advances come from friends and families of patients affected, which is why we are so grateful for your support of Cure JM.
Second, to expand and support Cure JM’s new Clinical Care Network to ensure the highest quality care is available to JM children in all corners of the country. As Cure JM celebrates its 20 th Anniversary, I am reminded that it was not that long ago when there were very few doctors in the U.S. with the knowledge and experience to manage this confounding disease well. You could count them on one hand. Often, it took months or even years to accurately diagnose JM, which resulted in delayed treatments and a more difficult path to control the disease. Fortunately, because of the dedication of our founding families and families like yours, those days are largely behind us. Ten years ago, there was only one children’s hospital in the country that was considered a JM Center of Excellence. Today there are five, led by the world’s foremost experts in JM care.
With the funds raised, we will help Cure JM expand their Clinical Care Network to additional locations so more children have access to excellent care. Doctors at Cure JM Clinical Care Network Hospitals are trained and experienced in providing juvenile myositis care. This access to quality care has greatly reduced the time to diagnosis and improved the outcomes of children impacted.
With your support to reach our goal and advance these two important initiatives, we feel blessed that we are giving all children diagnosed with juvenile myositis –– a brighter future ahead.
With deepest gratitude,