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.
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.
In October, Cure JM had two speakers give an update about drug discovery in juvenile myositis.
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.
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 […]
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 […]
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).
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 […]
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.
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 […]
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 […]
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.
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.
A world-renowned pediatric rheumatologist and immunologist tells us what juvenile dermatomyositis (JDM) is, how it is diagnosed, and how it is treated.
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.
Important Information for Parents to Know About IVIg (Intra-Venous ImmunoGlobulin)
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.
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.
In speaking with JM families nationwide, we have identified six, “mindful tips,” that are crucial when you, your child, and your family are battling JM.
This comprehensive guide to juvenile dermatomyositis features over 450 pages with contributions from over 80 experts and medical professionals.
Cure JM Executive Director, Jim Minow takes a deep dive into the key outcomes and highlights of this year’s National Family Conference.
Juvenile myositis patients and parents of children with JM often ask how important exercise is while on the path to recovery and remission.
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.
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.
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.
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.
Having a chronic and rare disease is a challenging experience for anyone to go through, and especially difficult on children and adolescents.
Helpful tips from other JM families on topics like reducing anxiety during treatments, shots and blood draws, dentist visits, sun shades, journaling, and more!
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.
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) 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.
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.
Drs. Kaveh Ardalan, Andrea Knight and Alison Manning discuss juvenile myositis’ impact on mental health.
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).
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.
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.
Our Journey with NIH — How One Rare Disease Organization Forged a Transformational Research Partnership. Moderator: Jim Minow, Executive Director, Cure JM Foundation
This video provides an overview of juvenile myositis for families newly diagnosed with juvenile dermatomyositis (JDM) or juvenile polymyositis (JPM).
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.
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.
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 with Dr. Megan Curran and Dr. Hanna Kim. Including current and future treatment strategies, immune system overview, steroids and other medications, and more.
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 to read past issues of the Family News.
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.
Help researchers find the cause and a cure for juvenile myositis by volunteering for these important studies.
Here are some tips from Anna, Morgan and Samantha to help you navigate medical and social issues like medications, socializing, school, and diet.
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.
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.
Here are some resources and recommendations for ways of addressing pain. These come from pediatric rheumatologists and other medical providers/researchers.