Mental and Emotional Health FAQ for Caregivers

Why is emotional/mental health important to our JM kids? Where can I find out more about mental health issues for our JM kids? Where can I learn more about how JM influences anxiety and depression? Where can I learn more about the signs of anxiety and depression in kids and teens? Where can I get […]

Cure JM’s 20th Year Opens With the Promise of Four New Research Grants

Research Grants: New Grantees and Exciting Updates From Existing Grant Recipients This year saw a very strong field of grant applications across a variety of JDM research projects. Again, we saw applications spanning the globe, recognition of the Cure JM Foundation’s preeminence in JM research, and global reach. There is a robust process to rank […]

What is Juvenile Myositis?

Doctor and young juvenile myositis patient.

Juvenile myositis, including juvenile dermatomyositis and juvenile polymyositis, is a group of rare and life-threatening autoimmune diseases, in which the body’s immune system attacks its own cells and tissues.

Juvenile Myositis 101

A world-renowned pediatric rheumatologist and immunologist tells us what juvenile dermatomyositis (JDM) is, how it is diagnosed, and how it is treated.

Information for the Newly Diagnosed

This session is for newly diagnosed families and covers JM basics, common treatments, sun protection, partnering with your medical team, keeping track of medical records, preparing for doctors’ visits, and seeking support.

Treatment Plans for Juvenile Myositis

Doctor with parent and juvenile myositis patient.

A treatment plan is based on many factors, including the severity and expression of the juvenile dermatomyositis (JDM). Each case is different and the symptoms can change over time.

Signs and Symptoms of Juvenile Myositis

Example images of JM symptoms including calcinosis, skin rashes, gottron papules, lipodystrophy, heliotrope eyelids, plaquenil reactions, and steroid effects.

Why Should I Consider Getting a Second Opinion for My JM Child

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. Featuring: Dr. Rider is a Pediatric Rheumatologist and Head of the Environmental Autoimmunity Group, National Institute of Environmental Health Science, National Institutes […]

Six Best Practices for the Newly Diagnosed

Two ladies discussing Juvenile Myositis Research

In speaking with JM families, we’ve identified seven “best practices” that are absolutely crucial when you, your child and family are battling juvenile myositis.

Myositis and You

This comprehensive guide to juvenile dermatomyositis features over 450 pages with contributions from over 80 experts and medical professionals.

IVIG: What Families Need to Know

Learn about IVIG (immunoglobulin therapy administered by vein). This session features Dr. Fatma Dedeoglu of Boston Children’s Hospital, Huub Kreuwel PhD, of Octapharma Plasma, and patient advocate, Michelle Vogel, of CSI Pharmacy.

How Important is Exercise for JM Patients While on the Path to Recovery and Remission?

Sue Maillard, Clinical Specialist Physiotherapist in Pediatric Rheumatology and Musculoskeletal Pain Juvenile myositis patients and parents of children with JM often ask how important exercise is while on the path to recovery and remission. That question was recently addressed beautifully at the Global Conference on Myositis presentation by physical therapist Sue Maillard, a foremost expert, clinical […]

Chapter Facebook Groups

Connect locally! Join one of our Cure JM Chapter Facebook Groups and meet other Cure JM Families at an upcoming event in your area. Connecting with families can be a great source of knowledge and support. To connect with other families in your region, find your area below or contact Betsy Leon at info@curejm.org. All […]

Transitioning Care From Pediatric Rheumatology to Adult Care

Rebecca E. Sadun, MD, Ph.D. Dr. Sadun is a pediatric and adult rheumatologist at Duke University, a Cure JM Center of Excellence. She recently presented at the Global Conference on Myositis (GCOM) on transitioning care from pediatric rheumatology to adult care. Dr. Sadun notes several concerning statistics relating transition to adult care: Dr. Sadun reports […]

Sun Protection

What are the latest approaches to managing skin disease and the best strategies for keeping my child sun safe? Featuring Drs. Susan Kim and Adam I. Schiffenbauer.

Exercise and Juvenile Myositis

In this presentation, Dr. Laura Tasan explains the importance of exercise for JM patients. Since JM children suffer from endurance and fatigue issues, exercise for JM kids is a safe form of “medicine” to counter the effects of the disease on a JM patient’s muscles.

Nutrition and Exercise

How to apply the nutrition and exercise recommendations sometimes provided by healthcare providers and make them work for your family in the “real world.”

Tips from JM Families for JM Families

Helpful tips from other JM families on topics like reducing anxiety during treatments, shots and blood draws, dentist visits, sun shades, journaling, and more!

School Accommodations for Juvenile Myositis

Many students with juvenile dermatomyositis or juvenile polymyositis need some special accommodations at school. And although each student is different, here is a list of some common accommodations that other Cure JM families have found helpful in the past.

The Importance of Taking Care of Yourself

Learn about the neuroscience of stress and how stressors impact one’s ability to cope with stress. Learn practices that help build resilience, self-awareness and improve our capacity to build relationships.

Myositis Specific Antibodies (MSAs): What Families Need to Know

Myositis-specific antibodies (MSAs) are associated with certain symptoms in JM patients. In some cases, knowing the MSA of a patient may help clinicians look out for certain symptoms and guide treatment decisions. Dr. Jessica Neely explains these associations, why they are important, and the limitations in our understanding of the role of MSAs in JM.

The Importance of Research

Researcher discusses chart on wall.

Research is vital to finding better treatments and a cure for juvenile myositis. Cure JM funds research studies through our Cure JM Centers of Excellence and the Cure JM Clinical Care Network.

Auto-Antibodies in Juvenile Myositis

This webinar will introduce you to the concept of Myositis Specific Antibodies, or MSAs. The webinar is presented by Sara Sabbagh, D.O., Clinical Fellow, Muscle Disease Unit at the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health (NIH).

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.

2022 Cure JM Medical Symposium

Juvenile Dermatomyositis: Advances in Basic Research, Translational Studies and Clinical care. Hosted by Duke University and Cure JM Foundation. March 12th, 2022.

Juvenile Myositis Educational Video

This video provides an overview of juvenile myositis for families newly diagnosed with juvenile dermatomyositis (JDM) or juvenile polymyositis (JPM).

Q & A With a Child Life Specialist

The main role of a Child Life Specialist is to help relieve the stress and anxiety that children feel when they become patients; whether in a doctor/dentist office, hospital, emergency room, hospice or any other setting in which children are served.

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. Medications for initial treatment or induction include steroids, […]

Understanding Treatments and Side Effects

Understanding treatments and side effects with Dr. Megan Curran and Dr. Hanna Kim. Including current and future treatment strategies, immune system overview, steroids and other medications, and more.

Cure JM Foundation Literature

The following brochures, handouts and posters are available for online viewing and printing. If you need professionally printed copies for an event, please contact us.

Family News

The Cure JM Foundation produces a monthly newsletter with the latest news and updates about Juvenile Myositis. Please click below to read past issues of the Family News. Read the Newsletter Family News: December 2022 Family News: November 2022 Family News: October 2022 Family News: September 2022 Family News: August 2022 Family News: July 2022 […]

Top 10 Tips for JM Families

Parents with child

The first few days, weeks and months after diagnosis are often overwhelming. We hope these ideas help you find ways to organize and support yourself and your child as you begin this new journey.

Cure JM Foundation Highlights

Cure JM has created resources and connections for over 4,000 patients and families in 40 different countries—including regional JM family support representatives throughout the U.S.

Tips for Teens

Here are some tips from Anna, Morgan and Samantha to help you navigate medical and social issues like medications, socializing, school, and diet.