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Dear JM Families,
As we reflect on the past year, I’m reminded of the profound impact that your financial support of Cure JM has made in the lives of children affected by juvenile myositis. This cruel disease steals the carefree moments of childhood, like hugging a parent or playing with friends—things that most of us take for granted. Thanks to the support of people like you, children are now surviving this devastating diagnosis. But survival comes at a price—years of
grueling treatments and difficult challenges that no child should endure.
One such child is James, who has been treated for JM for 17 years by Cure JM’s physician partners in his hometown of Washington, D.C. James recently shared his sadness that due to his treatments, he misses 24 school days each year. That is 24 days in the hospital, hooked up to an IV, receiving an infusion of a “healthy immune system” into his body. This infusion keeps his juvenile myositis in check, but it comes at the expense of James missing out on much of his childhood. James also endures weekly chemotherapy treatments and takes a handful of daily medications – each of which has harsh side effects—all to keep his disease at bay. Sadly, his story is not unique.
Though our children with juvenile myositis often appear healthy on the outside, they are trading a carefree childhood for a childhood filled with traumatic hospital stays and harsh treatments. They are enduring hundreds of days of missed school and childhood activities, all to keep the insidious disease juvenile myositis in check.
This is too steep a price for these children to pay. We must do better for our children.
That’s why, with your support, the Cure JM Foundation is leading the global charge to advance education, care, and research for juvenile myositis. While we’ve made tremendous strides in just 21 years—shortening diagnosis times, expanding our Cure JM Clinical Care Network, and funding groundbreaking research—we still have much to do. With your support, we have ambitious plans for the year ahead.
First, we are expanding our physician education program to help every child receive the best care. One crucial pillar of our physician education program is our Summit on JM Care and Research. We will hold three online summits next year, each of which plays a vital role in disseminating the latest advancements in JM treatment to pediatric rheumatologists nationwide. These summits also foster collaboration among physicians who openly share cutting-edge research and best-practice care techniques. These summits give every doctor access to the latest cutting-edge information and help them provide the best care to their patients across the U.S. and beyond. Funding our clinician education and collaboration program next year will require an investment of $300,951.
Second, we are expanding our Cure JM Clinical Care Network so children and young adults can receive the best JM care close to home.
Twenty years ago, the landscape of juvenile myositis care was bleak. There were only a scarce number of JM specialists – perhaps three or four nationwide. Children faced a daunting journey, suffering in silence. Many children didn’t survive their battle or faced life-long disabilities because doctors simply didn’t know what JM was or how to treat it. That is why Cure JM has embarked on an ambitious mission: to establish a nationwide network of
doctors specifically trained to diagnose and treat this complex disease.
Today, the Cure JM Clinical Care Network is 55 members strong. Although we couldn’t be off to a better start, we still have much work to do. In the coming year, we aim to expand our network to make the best JM care more accessible to more children, closer to home. But building a network of JM specialists is just the first step. Even these dedicated doctors lack the crucial resources needed to deliver the best possible care. This is where you step in as a vital partner. With your financial support, we will increase our funding to our physician-partners in Cure JM’s Clinical Care Network and improve JM care across the United States.
We will provide state-of-the-art diagnostic equipment, essential training, and the resources physicians need to create personalized treatment plans for every patient. These programs will directly improve the lives of children across the country. Funding these programs to improve JM care across the United States next year will cost $505,625.
Finally, the heart of our mission is to find better treatments and advance progress toward a cure. That is why we have established the Cure JM Clinical Trial Fund, with the ambitious goal of raising $1 million by the end of the year. This fund will be dedicated to funding cutting-edge clinical trials to bring transformative new treatments to our children.
As you heard earlier, James’ story is all too common. The current cornerstone treatments of JM are corticosteroids and chemotherapy. Children endure many years of these harsh treatments just to have as many healthy days as possible. Good simply isn’t good enough. We must find better treatments.
Our Clinical Trial Fund will accelerate research in several promising areas, including:
1. Advancing a clinical trial for a new pill that shows enormous promise. With your support, we will provide funding for a clinical trial of a new pill called deucravacitinib. This is a promising new treatment known as a “JAK inhibitor.” This new pill shows promise to reduce the use of steroids and chemotherapy, giving our children a better quality of life with fewer side effects. This means fewer days in the hospital, fewer days of missed school, and more joys of childhood.
2. Finding More Steroid Alternatives. For more than 50 years, corticosteroids have been a staple of juvenile myositis treatment. Though lifesaving, we know that giving young children and teens high-dose steroids has immediate and life-long side effects. That is why we are advancing cutting-edge research around the globe to develop a handful of new treatments that target juvenile myositis, more precisely, without the long-term side effects of steroids.
3. Investigating a New Immune System “Reset” Therapy. We are excited about the potential of CAR-T therapy, an immune system “reset" that has been used in oncology and could revolutionize JM treatment. While it's still very early, and we can't rush the scientific process, we are hopeful about the possibilities this innovative new treatment may hold.
These are just three of the dozens of innovative programs we have in progress. In the next year, funding these critical programs to find better treatments and advance toward a cure will cost $1,046,975.
We cannot do this work without you. Your gift today will make an immediate and lasting impact.
Every dollar you donate will be matched by the Coffey Family Match, doubling the power of your support.
Like most rare diseases, progress is only made possible by you, your friends, and your family, who care about our children battling this life-altering disease. No gift is too small. Every dollar brings us one step closer to a future free of juvenile myositis.
Your support is more than a donation; it's an investment in the future of our deserving children. By making a gift today, you're helping us write a new chapter in the story of juvenile myositis – a chapter filled with hope, healing, and triumph.
With your help, we can create a future where these young heroes can pursue their dreams without limits.
With my deepest gratitude,
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