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 […]
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 […]
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 […]
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 […]
The Grandparent Council meets on the 4th Thursday of every month. Here is the August Grandparent Council Meeting recording for your review.
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 firstname.lastname@example.org. All […]
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 […]
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, […]
Important Information for Parents to Know About IVIg (Intra-Venous ImmunoGlobulin)
Here are some ideas shared with us by JM grandparents on how how to best support their grandchild, siblings, and family.
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 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.
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.
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.
Having a chronic and rare disease is a challenging experience for anyone to go through, and especially difficult on children and adolescents.
Example images of JM symptoms including calcinosis, skin rashes, gottron papules, lipodystrophy, heliotrope eyelids, plaquenil reactions, and steroid effects.
With Dr. Laura Tasan
How to apply the nutrition and exercise recommendations sometimes provided by healthcare providers and make them work for your family in the “real world.”
Helpful tips from other JM families on topics like reducing anxiety during treatments, shots and blood draws, dentist visits, sun shades, journaling, and more!
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.
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.
This comprehensive guide to juvenile dermatomyositis features over 450 pages with contributions from over 80 experts and medical professionals.
There are resources available for mental health care though it can take awhile to research them, access them, and follow up on the care.
A world-renowned pediatric rheumatologist and immunologist tells us what juvenile dermatomyositis (JDM) is, how it is diagnosed, and how it is treated.
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.
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 […]
There are a number of published studies about juvenile myositis. Browse this list of over 100 published research studies and abstracts.
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.
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.
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.
Explore the importance of exercise in the management of juvenile myositis. Presented by Sue Maillard, a specialist physiotherapist at Great Ormond Street Hospital, London.
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).
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.
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.
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.
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.
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.
Our Journey with NIH — How One Rare Disease Organization Forged a Transformational Research Partnership. Moderator: Jim Minow, Executive Director, Cure JM Foundation
Juvenile Dermatomyositis: Advances in Basic Research, Translational Studies and Clinical care. Hosted by Duke University and Cure JM Foundation. March 12th, 2022.
This video provides an overview of juvenile myositis for families newly diagnosed with juvenile dermatomyositis (JDM) or juvenile polymyositis (JPM).
We recommend that mental health assessment and treatment options be an integral part of comprehensive care for children, adolescents, and adults with juvenile myositis.
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.
With Dr. Megan Curran and Dr. Hanna Kim
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.