Meet Other Cure JM Families at an Upcoming Event in Your Area
Since its inception in 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. We are pleased to announce two easy ways to participate. About Walk Strong to Cure JM […]
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 […]
Meet with the Researchers Behind Two New Exciting JM Drugs
Hear directly from the researchers behind two exciting new treatments for juvenile myositis. Learn details of the new treatments and what these drugs could mean for you and your child with JM.
What is Juvenile Myositis?
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
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.
What Parents Should Know About IVIg (Intra-Venous ImmunoGlobulin)
Important Information for Parents to Know About IVIg (Intra-Venous ImmunoGlobulin)
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 […]
Update on a Promising New Drug to Treat JM: Vamorolone
Cure JM is making extraordinary progress in juvenile myositis research, including a partnership with ReveraGen Biotech to advance the drug vamorolone toward a clinical trial in JM.
Six Best Practices for the Newly Diagnosed
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.
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 email@example.com. 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 […]
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.
Resources for Emotional and Mental Health
Having a chronic and rare disease is a challenging experience for anyone to go through, and especially difficult on children and adolescents.
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.
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.
Emotional and Mental Health: Getting Help
There are resources available for mental health care though it can take awhile to research them, access them, and follow up on the care.
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
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.
Impact of Juvenile Myositis on Mental Health
Drs. Kaveh Ardalan, Andrea Knight and Alison Manning discuss juvenile myositis’ impact on mental health.
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).
Transitioning from Pediatric to Adult Care
Preparing for the transition to adult care may begin with patients beginning to take an age-appropriate role in their care as early as the tween years.
The Importance of Exercise in Juvenile Myositis
Explore the importance of exercise in the management of juvenile myositis. Presented by Sue Maillard, a specialist physiotherapist at Great Ormond Street Hospital, London.
Advocating for Your Child: Navigating School and Community
Practical tips on how to navigate your child’s school system. Presented by Michelle Best (special education and mental health advocate) and Sue Carpenter (special education resource specialist teacher).
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.
Rare Disease Day at NIH 2022: Cure JM Session
Our Journey with NIH — How One Rare Disease Organization Forged a Transformational Research Partnership. Moderator: Jim Minow, Executive Director, Cure JM Foundation
Juvenile Myositis Educational Video
This video provides an overview of juvenile myositis for families newly diagnosed with juvenile dermatomyositis (JDM) or juvenile polymyositis (JPM).
Emotional and Mental Health Resources: Teens and Young Adults
Besides the normal turmoil of adolescence, having a diagnosis of juvenile myositis can present you with more stress due to changes in body image, medical visits, medicines, etc.
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.
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: June 2023 Family News: May 2023 Family News: April 2023 Family News: March 2023 Family News: January 2023 Family News: December 2022 […]
Top 10 Tips for JM Families
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.
An Educational Resource and Exercise Video for Children and Their Parents
This video features stretching exercises that are an important part of rehabilitation for JM patients. The video was created for Muscular Dystrophy patients, but is still applicable for JM patients.
Emotional and Mental Health: General Resources
In order to understand how our families cope with mental health, we collaborated with Andrea Knight MD MSCE, an expert in the autoimmune and mental health fields.
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.
Research Volunteers and Assistance Needed
Help researchers find the cause and a cure for juvenile myositis by volunteering for these important studies.
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.
Signs of Depression and Anxiety in Children and Teens
Kids with JDM experience depression and anxiety at 2-3 times a higher rate than their peers. We hope that by outlining the common signs and symptoms of depression and anxiety, you are better able to support your children.
Emotional and Mental Health Resources for Parents and Caregivers of Newly Diagnosed Children
As the parent of a newly diagnosed child, you might feel overwhelmed and worried. These are normal reactions. You might want, and need support, from others who have been, or still are, on this same journey.
Resources for Patients Who Have Pain
Here are some resources and recommendations for ways of addressing pain. These come from pediatric rheumatologists and other medical providers/researchers.
Products and Resources To Protect Your Child From the Sun
Did you know an average white t-shirt only has a UPF of 7? And that drops to UPF3 when wet? A dark denim shirt can have a UPF of 1700, but how many children would be happy wearing such a heavy fabric on a hot day?