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.
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.
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.”
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.
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.
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.
Sample Medication Chart
The number of medications used to manage juvenile myositis and its side effects can be overwhelming. Cure JM developed this sample medication chart to help you stay organized.
Child’s Checklist for Doctor Visits
One of the ways you can help your children cope with juvenile myositis is by giving them a sense of control over their doctor visits and treatments.
Alexandra’s Story
Alexandra grew up in Philadelphia. At eight years old, she was diagnosed with juvenile dermatomyositis. Her first symptom was pain in her cuticles whenever she touched something. Then came the rash, weakness, painful inflammation, and a host of other symptoms. Daily activities were painful, but the rash would be her main symptom during her over […]
Madi’s Story
Kindergarten is about making friends, learning how to count by two’s, and reading Biscuit books. But for Madi, Kindergarten was not so simple.
Cadence’s Story
Cadence was only 18 months old when she was diagnosed with juvenile dermatomyositis. Her mother took her to their pediatrician’s office multiple times, only for covering nurses to misdiagnose her symptoms. “I knew something more was going on—I just did not know what,” says Stephanie, Cadence’s mom. Stephanie described Cadence’s symptoms to a physician co-worker, who […]
Our Story
Cure JM was founded 19 years ago by a small group of volunteers who wanted to change the world for children with a rare disease few had ever heard of—juvenile myositis, or JM.
Nathanael’s Story
Nathanael was an active 7-year-old. In the summer of 2014, he played baseball under the Southern California sun, and that’s when the rash started. “He started having this weird rash on his legs,” says Maggie, Nathanael’s mom. They brushed it off as allergies and looked for the right cream, assuming it would eventually disappear. Then […]
Community Advisory Board
Cure JM’s Community Advisory Board plays a vital role in representing JM families from diverse backgrounds to help support this cutting edge research project. Cure JM CAB members are the link between the greater JM community and the project’s research team, working together to ensure that the needs of the entire JM community are understood and addressed.
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, […]
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 […]
Elinor: A Grandparent’s Story of Hope
My grandson, Connor, was diagnosed at a very young age. Since he was two years old, he has struggled with rigorous and invasive treatments. From then on, we knew he needed to have all his family’s love and support, now more than ever. Life hasn’t been easy for him, and it breaks my heart to […]
Olivia’s Story
Olivia is four years old, and she’s been fighting juvenile myositis for almost two years. At the beginning of her treatment, Olivia’s parents, Leah and P.J., felt helpless in easing her pain. They wanted to help her however they could, so they channeled their efforts. “Raising money for Cure JM helped us focus our energy […]
Meet the Kania Family: Giving Tuesday Co-Chairs
Leah and PJ are parents to four-year-old daughter Olivia, who has been bravely fighting JM for almost two years. Together, they lead Cure JM’s annual Giving Tuesday Fundraiser. At the beginning of treatment, Leah and PJ felt helpless in easing Olivia’s pain—so they channeled their efforts into Cure JM.
Grandparent Council (GPC) Meeting Recap • May 25, 2023
Meeting notes are posted on the Grandparent Council Bookshelf. Next Meeting: Date June 22 2023 at 3 pm EDT/2 pm CDT/1 pm MDT/12 pm PDT The March Grandparents Council (GPC) meeting was held on May 25, 2023, at 3 pm EDT. These meeting notes will be posted in the Grandparent Council Bookshelf on google docs, along with previous […]
Cincinnati Children’s Hospital Upcoming Events
JOIN US! Two Upcoming Events for Juvenile Dermatomyositis Families & Patients Online Town Hall Friday June 2nd 1:00 p.m. Eastern Sun Protection Tips & Tricks for Summer PRESENTED BY Sheila Angeles-Han MD, MSc Physician, Division of Rheumatology Cincinnati Children’s Hospital Medical Center Kalyani S. Marathe, MD, MPH Division Director of Dermatology Cincinnati Children’s Hospital Medical […]