Jim’s 2024 Resolutions

Dear Cure JM Families,

Each January, I share with our community a few personal New Year’s resolutions for the year ahead. I believe these resolutions help us keep a keen focus on the priorities that matter most—better treatments, better care, and a cure for JM.

A few years ago, we pledged to identify new candidate drugs with fewer side effects so we could begin the process of testing those drugs for safety and efficacy in clinical trials. Over the past year, one of those clinical trials for the drug abatacept was completed at Cure JM’s Center of Excellence at George Washington University, and the drug showed effectiveness in treating juvenile myositis. Through our collaborative efforts, abatacept is now an available option in our growing number of JM treatments.

In 2024, we remain laser-focused on drug development and repurposing to bring better treatments to JM patients. We have funded a new grant to investigate deucravacitinib, the newest of the “JAK inhibitor” drugs that was recently approved for use in another indication. In fact, based on the promising results of these and other Cure JM-funded research initiatives, I can envision a time in the near future when we will be funding as many as three—and possibly more—clinical trials. I am optimistic that recent FDA approvals for other promising drugs in other inflammatory diseases will help clear a path to accelerated testing in JM.

This year, we will continue to push forward with clinical trials for new and better drugs. At the same time, we must increasingly underscore the importance of continued improvements in clinical care by supporting doctors and fellows in their training to become experts in providing quality care for ALL JM kids.

As Cure JM evolves, I am reminded that it was not that long ago when there were few doctors in the U.S. with the knowledge and experience to manage this complex disease well. Often, it took months or even years to accurately diagnose JM, which resulted in delayed treatments and made for a more difficult journey. Over the past 20 years, our progress has led to a 75% reduction in diagnosis times. Children, teens, and young adults are being diagnosed earlier than ever, shedding light on the need for increased education and support for patients in different life phases, including the transition into adulthood.

Fortunately, because of the unwavering commitment of our founding families and families like yours, the most difficult days are largely behind us. A decade ago, there were only one or two children’s hospitals in the country with the expertise to be a Cure JM Center of Excellence.

Today, best-practice care is driven by the Cure JM Clinical Care Network, which now includes 25 children’s hospitals in the U.S. and abroad. Doctors at Clinical Care Network Hospitals are trained and experienced in providing expert JM care. If your child were to be diagnosed with juvenile myositis today, chances are better than ever that you could find an experienced JM doctor within your region.

This leads me to my first 2024 New Year’s resolution: “chances are” is not good enough. There are areas of the country where there are few (and perhaps no) doctors who are familiar with JM and who certainly are not JM specialists. The expansion of Cure JM’s Clinical Care Network last year was an important step in addressing what is essentially a shortage of expertise. It is a significant step, but we have many more to go in developing and supporting the Clinical Care Network’s mission.

 And so, we are resolved to:

1) Increase access to “Best of Class” doctors and medical providersTo better meet the medical needs of ALL kids with JM will require training more pediatric rheumatologists and recent medical school graduates/residents as JM specialists. Cure JM will accomplish this by expanding training programs and funding fellowships to encourage more early and mid-career doctors to pursue JM as a research and clinical specialty.

2) Begin patient enrollment for two “new drug” clinical trials  One trial plan has already been approved by the FDA; the second is under consideration. Cure JM will contribute significantly to the financing both as funding is available. These two trials will build on the success of last year’s successful abatacept trial conducted at the Cure JM Center of Excellence at George Washington University.

3) Complete the development of a comprehensive transition programAs the number of adolescents (13 – 18 year-olds) with JM increases, so does the need for a comprehensive transition program as these teens age out of pediatric care. For most families, this is a “Who You Gonna Call?” issue, and Cure JM will secure a huge head start on resolving transition issues in 2024.

As I mentioned, there are several treatments and clinical care programs before us that, with our support, I believe will have a game-changing impact on our mission. Our job is to do everything possible to encourage and accelerate these clinical trials and educational programs to fulfill our pledge of progress. 

We have much to do as we move forward to improve access to care, better treatments, and a cure. We can and will fulfill our resolutions for JM kids. Thank you for all you have done to make our past and future resolutions possible.

With appreciation,

Jim Minow Executive Director, Cure JM Foundation james.minow@curejm.org

P.S. You can drive our 2024 resolutions by making a gift below. Your gift will be put to work to expand expert JM care, advance clinical trials for better treatments, and support JM patients and families on their rare disease journeys.

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Parrish’s Story

We would like to introduce a one-of-a-kind, competitive, and determined young man, named Parrish. His story of resiliency and hope is one that will resonate with many of us in the Cure JM family. Parrish faced many challenges in his journey with JM, but found hope and support in his family and the Cure JM community. We are pleased to now share his experience to help others facing the same struggles during Myositis Awareness Month.

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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