Season of Gratitude

Executive Director Update - A Season of Gratitude

Dear Cure JM Families and Friends,

I am writing to wish you and your family the very best this Holiday Season. This time of year, especially, I am filled with deep appreciation for all that Cure JM families have accomplished to advance our mission, to improve the lives of children living with JM, and to support the doctors and researchers driving better treatments as we fight for a cure.

This is my Season of Gratitude.

I am grateful for the doctors and health professionals who are relentlessly dedicated to the care and well-being of our JM children. We are honored to have you on the Cure JM team and pledge our continued support for your continued work to serve every JM family with faster diagnoses, improved treatments, and the best possible path to remission. That you have created the Cure JM Clinical Care Network of trained and qualified JM doctors in every corner of the country speaks volumes about your passion. Our children deserve the best, and you are giving that to them.

To our researchers, I am grateful for the progress you have made toward a better understanding of the JM autoimmune response—a knowledge of the complex cascade of this disease. This research leads not only to more and better treatment options, but also better drugs to manage JM. Some of these drugs are already in use, and some are in or are about to enter clinical trials to prove effectiveness in treating JM.  

To our board of directors (and former board, too), I am grateful for your vision, leadership, and unshakable will that we have to do more. Twenty years ago, when you founded Cure JM, a child’s journey from diagnosis to effective intervention was far more arduous and dangerous than it is today. That Cure JM survived those challenging early years of few treatments, few doctors, and scarce funding only to become a critical agent of advancement is a testament to your unwavering belief that progress is possible with the collective dedication to find it.

To the Cure JM staff, thank you for your exceptional dedication. You are just that—exceptional. Your dedication (and, I might add, long hours) has built an organization now widely recognized and admired as the leader in funding and advancing research in pediatric myopathies like JM.  

I am grateful for you—our families, parents, grandparents, relatives, and friends who make all of Cure JM’s accomplishments possible. Year after year, you’ve held the Candle of Hope as believers in the mission to provide better treatments and a cure. You have inspired us—your board, your staff, your doctors. Indeed, today, the Candle of Hope is more of a bright Torch of Progress, illuminating the path for a better tomorrow for JM patients everywhere.  

So yes, in my Season of Gratitude, please accept my heartfelt thanks. We have much left to do, but what we have accomplished together has been simply extraordinary.  Let’s make 2024 our best year ever. 

With appreciation,

Jim Minow
Executive Director, Cure JM Foundation

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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