Natalia’s Story

Natalia is seven years old, and in January 2021, she began experiencing pain. Everyday tasks were difficult. Natalia’s parents, Lindsay and Matt, reached out to her pediatrician, who ran some bloodwork, but recommended Natalia be tested for Celiac disease. While Natalia’s blood test showed positive for Celiac disease, they would’ve had to wait weeks for […]

Meet Other Cure JM Families at an Upcoming Event in Your Area

Looking for our local walks? Click here. Since its inception in the Fall of 2016, Walk Strong to Cure JM has raised more than $3 million to fund juvenile myositis research and programs. As promising treatments move into clinical trials, the need for research funding is greater than ever. Join the hundreds of Cure JM […]

2023 Cure JM National Family Conference

Save the date for the Cure JM Family Conference! When: June 29-July 2, 2023. Where: Marriott Washingtonian Hotel, Gaithersburg, Maryland.

Thursday, June 29–Sunday, July 2, 2023 • Washington, DC The Cure JM Family Conference is back! Join families from around the country to learn about the latest treatment and research advances to share in our hope and progress. 🎈Receive the latest updates from world-renowned researchers and physicians, including Cure JM’s Medical Advisory Board. 🎈Connect with other […]

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, PhD 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 depressing statistics relating transition to adult care: Health outcomes for […]

Randy: A Grandparent’s Story of Hope

Over ten years ago—in the spring of 2012—Brynn’s parents, Matt and Carrie, noticed a change in their daughter. Brynn had seemed like her normal four-year-old self while with her grandparents for Easter. But by May, something was different. “Our daughter, Carrie, and her husband Matt noticed that Brynn was not her active self,” says Randy, […]

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.

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.

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.

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.

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.

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

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 and You

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

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.

Juvenile Myositis Research Links

Three little kids holding a sign that says "Hope"

Progress and Prognosis in Juvenile Dermatomyositis, Juvenile Dermatomyositis: A 20-year Retrospective Analysis of Treatment and Clinical Outcomes, Juvenile Dermatomyositis: A Case Study, and others.

July 2022 Grandparent Council Meeting Recap

Two new grandparents joined the council, and Betsy León was welcomed to the Grandparents Council as part of staff support along with Shannon Malloy. Participants reviewed and approved minutes from the June 23 meeting. These notes will be stored on the Grandparent Council Bookshelf in the future, along with numerous other useful resources. The Grandparents […]

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).

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.

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.

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.

2021 Impact Report and 2022 Goals

Featuring Jim Minow, Executive Director of Cure JM, Dr. Andrew Heaton, Ph.D, Chief Scientific Officer, and Shannon Malloy, Director of Development and Family Engagement.

Cure JM Medical Symposium 2022

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 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

Three children with "Hope" sign

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.