Affordable and Accessible Treatments for JM

Affordable and Accessible Treatments for JM

Two special guest speakers, Michelle Vogel, MPA, IV Solutions RX, and Laurel Cherwin, BSN, RN, IgCN, Octapharma, shared information on navigating affordable treatments and care for JM patients.

The FDA’s Ruling on Vamorolone in DMD

You may have heard about yesterday’s FDA ruling, which approved vamorolone as an alternative steroid for use in Duchenne muscular dystrophy.

Vamorolone is a new steroid alternative with fewer side effects than prednisone. The drug aims to preserve the beneficial anti-inflammatory and muscle-strengthening characteristics of corticosteroids, while decreasing some of the unwelcome side effects, including bone fragility, delayed growth, and behavior changes.

As we learned in yesterday’s announcement, vamorolone was found to be both safe and effective as a therapy for Duchenne muscular dystrophy in its newly approved indication.

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.

Livy and Gianna’s Enduring Friendship

Building friendships with others in the JM community can be difficult. Since JM is a rare disease, medical common ground might be a state away. But at this summer’s conference, Cure JM’s common ground was Gaithersburg, MD. There, a friendship between two girls was built—but not from scratch. This summer Gigi and Livy shared a […]

Getting the Diagnosis

Getting the Diagnosis. Megan Curran, MD

It often takes a bit of time for children with juvenile myositis (JM) to get a proper diagnosis. This is due to the fact that it is rare, it comes in many different forms, and the disease looks different for each individual. Getting a diagnosis is important no matter how long the process takes. Click […]

10th Annual Cure JM Medical Symposium

10th Symposium for Clinicians and Researchers - Juvenile Dermatomyositis

The 10th Annual Cure JM Medical Symposium in partnership with Duke University happened May 13th, 2023, virtually, with presentations from world-leading researchers and clinicians on advancements in basic research, translational studies, and best practice clinical care in juvenile dermatomyositis. For clinicians, researchers, and healthcare professionals unable to attend the event, we are honored to share […]

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.

Mental and Emotional Health FAQ for Caregivers

FAQ Graphic

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

Breaking research

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

Juvenile Myositis 101- little girl holding an I need a cure sign

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

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.

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

Town Hall Meeting Sunday September 11, Why I should consider getting a second opinion for my JM Child with Lisa G. Rider and Jeffrey Dvergsten

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.

Myositis and You

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

Chapter Facebook Groups

JM Moms (care givers) Facebook group image

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.

Exercise and Juvenile Myositis

Exercise and Juvenile Mytosis

Over the past few years, exercise in juvenile myositis patients has garnered the attention of experts. Exercise is regarded as an important therapy in JM and should be done whether a child is in active disease or remission.

Sun Protection

Sun Protection Tips and Tricks

Whether newly diagnosed or well into your JM journey, you’ve probably heard that sun and ultraviolet light can be a factor in triggering disease activity. Our families and patients often wonder the best ways to protect themselves or their children during the most UV-intense months.

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!

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.

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.

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

In this presentation, Drs. Curran and Kim explain second-line medications that should be considered after the initial treatment period with induction of treatments already discussed—either the patient cannot tolerate these medications or is still active.

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 kids in dark blue Cure JM shirts holding a 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.

Family News

Family News

The Cure JM Foundation produces a monthly newsletter with the latest news and updates about Juvenile Myositis. Please click to read past issues of the Family News.

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.

Resources for Patients Who Have Pain

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.

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