All Family Resources

Video Resources

Setting and Discussing Your Family’s Treatment Goals- Join Cure JM Foundation’s July “Ask the Doc” Town Hall with Dr. Angela Chun for expert guidance on setting treatment goals. Dr. Chun will host a Q&A session, offering valuable insights into key considerations for establishing treatment goals, essential topics to discuss with your doctor, and the benefits of having clear treatment objectives.
Helping Parents & Kids When They Express High Emotional Distress- This expert-led presentation is for parents about how to help their kids and themselves when their kids express high levels of emotional distress. Our presenters will talk about ways parents can calm themselves, share tips for talking to kids with age-appropriate information, and know when to find help from a professional. There will be a Q&A session immediately following the presentation.
IVIG – What Parents and Caregivers Need to Know- Hear from a panel of four experts about IVIG, including important tips for a successful IVIG journey. 
The panel will discuss a variety of must-know information on successful IVIG treatment days, navigating the system, at-home vs. outpatient options, pre & post-treatment checklists, and more.

A Peek Inside Progress- As the New Year rises, a hopeful horizon brightens for Cure JM. It is with great thanks to our Cure JM community for your extraordinary commitment to funding new research as we move into 2024. Celebrate the achievements with us and review our community’s impact and our goals for the new year. 
Partnerships in Developing New JM Treatments-In October, Cure JM had two speakers give an update about drug discovery in juvenile myositis. Joni L. Rutter, Ph.D., Director, National Center for Advancing Translational Sciences, National Institutes of Health, updated families about the process of drug discovery and development and how partnerships like Cure JM’s NCATS partnership accelerate new treatments for juvenile myositis. Eric Hoffman, Ph.D., President and CEO, of ReveraGen Pharmaceutical, brought families into the inner circle of understanding how new drugs move through the process and the role that Cure JM, parents, patients, and grandparents play in this process.
Ways to help your kids and yourself cope living with JM– Cure JM Mental Health Coordinator, Suzanne Edison discusses ways to help your kids and yourself cope living with JM. Learn about emotional and behavioral challenges that often come with chronic diseases like juvenile myositis and ways to help patients and caregivers cope.
Information for Newly Diagnosed Families- The two featured physicians care for juvenile myositis (JM) patients and explain the following topics: JM basics, common treatments, sun protection, partnering with your medical team, keeping track of medical records, preparing for doctors’ visits, and seeking support.
Meet the Researchers Behind Two New Exciting JM Drugs- Hear directly from the researchers behind two of the most exciting new treatments for juvenile myositis (JM). You’ll learn details about two new treatments and what these drugs could mean for you and your child with JM.
Juvenile Dermatomyositis (JDM) 101 with Ann Reed, MD
Dr. Ann Reed is Chair of the Department of Pediatrics at Duke University, a Cure JM Center of Excellence, and a member of Cure JM’s Clinical Care Network. In this video, Dr. Reed explains what JDM is, how it is diagnosed, and how it is treated.
Why Should I Consider Getting a Second Opinion- Learning that your child has Juvenile Myositis may feel overwhelming. Second opinions can confirm a diagnosis, help you understand different treatment options, and review your child’s current treatment plan to ensure it’s the right one for your family.
Update on a Promising New Drug To Treat JM: Vamorolone- Cure JM is making extraordinary progress in juvenile myositis (JM) research, including a partnership with ReveraGen Biotech to advance the drug vamorolone toward a clinical trial in JM. Vamorolone is a steroid replacement with all the benefits of steroid treatment without devastating side effects. Vamorolone is currently in a clinical trial in Duchenne Muscular Dystrophy children.
Sun Protection Tips and Tricks-  Watch Dr. Marathe and Dr. Angeles-Han to learn more about:
choosing and applying the best sunscreen for all skin colors, choosing the proper sun protective clothing, why sunscreen and sun-protective clothing is important for JM patients, and considering sunscreen as a form of medicine.
Skin Disease and Sun Protection- Dr. Kim and Dr. Schiffenbauer present useful information regarding: ultraviolet and artificial light as it pertains to JM patients, the UV index and how to limit one’s exposure, choosing and applying sunscreens during different seasons, and treatments for skin in JM patients.
The Importance of Taking Care of Yourself- This interactive session explains the neuroscience of stress and how stressors impact one’s ability to cope with stress. In this presentation, learn practices that help build resilience and self-awareness and improve your capacity to build relationships. Featured speaker Gill McClean, Director of Professional Development at Pure Edge, Inc., regularly trains and hosts webinars across the country on self-care and integrating health and wellness best practices. She regularly presents at conferences to share best practices for managing stress.
Impact of Juvenile Myositis on Mental Health- Drs. Kaveh Ardalan, Andrea Knight, and Alison Manning discuss juvenile myositis’ impact on mental health and how parents can address them.
Transitioning from Pediatric to Adult Care- In this presentation, join Rodolfo Curiel, MD, FACP, FACR, and Rebecca Sadun, MD, Ph.D., review strategies for parents to aid JM kids in their transition from pediatric to adult care.The transition aims to optimize health and assist youth in reaching their full potential. Common steps to prepare for transition include: establishing a policy, tracking progress, administering transition, conducting readiness assessments, planning for adult care, and transferring and integrating into an adult practice.
How to Talk to Your Child About Mental and Emotional Health- We know that living with juvenile dermatomyositis affects the physical as well as emotional health of our children. Sometimes it is hard to distinguish “normal” behavior and feelings from more difficult ones of depression and anxiety. This presentation aims to increase understanding and awareness of emotional health and parents’ important role in supporting and encouraging a child’s mental health habits.
Rare Disease Day at NIH 2022: Cure JM Session- Jim Minow, Executive Director of Cure JM Foundation, moderates this rare disease day session at the National Institutes of Health.
The presentation’s objective is to share how one small rare disease organization that funds research to find better treatments and a cure impacts in part on creating effective partnerships with leading research hospitals and, most notably, with NIH.
Learn about the Cure JM Foundation and how it evolved to where they are today.
Juvenile Myositis Educational Video- This informational presentation was created for families with children newly diagnosed with juvenile dermatomyositis (JDM) or juvenile polymyositis (JPM), the most common forms of juvenile myositis (JM). It provides an overview of the disease and what to expect through doctor, patient and family interviews.
Understanding Second-Line Treatments and Side Effects- Overall, treating JM aims to treat an overactive immune system. Ways to treat an inappropriately overactive immune system include the following: immunosuppression, or reducing the activity of the immune system, which comes with a risk of infection, and immunomodulation, or reducing the activity of the immune system.
Second-line medications that should be considered after the initial treatment period of treatments already discussed—either because the patient cannot tolerate these medications or the disease is still active. Second-line treatments are sometimes considered alternatives, switching one out for another, and sometimes considered add-on therapy to eliminate the disease.
Understanding Treatments and Side Effects- In this presentation, Dr. Curran and Dr. Kim explain JM’s current and future treatment strategies. An overview of the immune system is provided because understanding the system is important before understanding the treatment.
Topics reviewed in this presentation include the following: current and future treatment strategies
Immune system overview, steroids, and other medications, how medications work, and the side effects of those medications, sun protection, physical therapy, and exercise treatments.
Dr. Curran and Dr. Kim discuss, in detail, the following medications and their side effects: Methotrexate, Steroids, Hydroxychloroquine, and Intravenous Immunoglobulin (IVIG).
Support Cure JM- Cure JM Foundation is a 501(c)(3) nonprofit, volunteer-managed organization dedicated to finding a cure for juvenile myositis (JM). JM is a group of rare and life-threatening autoimmune conditions affecting approximately 17,000 children in the United States alone.
Parker’s Journey and the Start of Cure JM- This amazing video details how the Cure JM Foundation started. Twenty years later, Cure JM is the global leader in juvenile myositis (JM) research. 
Today, Cure JM celebrates its 20-year commitment as a patient advocacy and juvenile myositis research leader, paving the way to better treatments for JM while improving the lives of families affected by the disease.
2021 Impact Report and 2022 Goals- Watch this special recording of our 2021 Cure JM Impact Report and Goals for 2022, featuring three speakers and three members of our Board of Directors. This informative presentation includes a brief overview of the organization and the Clinical Care Network, and a comprehensive overview of what Cure JM accomplished in 2021.

Walking Strong – Empowered by Unity

Like other teens new to the JM journey, Catie Beth Caldwell and Madi Cook were two individuals who felt alone at the beginning of their journeys. Catie Beth was diagnosed just before the Covid-19 pandemic took hold of the world as we knew it. With this came feelings of isolation and loneliness. These emotions were commonplace for many teens but were only compounded by teens new to a rare disease diagnosis. These first years of the “new normal” were difficult to navigate.

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