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.
My Mission, My Impact – The Carlson’s Ride Strong
We are continually moved by the creativity and unwavering passion that our families exude in their DIY fundraisers that make our mission possible. My Mission, My Impact, is dedicated to spotlighting some incredible events and fundraisers that breathe new life into our continued mission. The families featured have channeled their creative energy and talents to […]
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.
Two Grandmothers’ Stories
Two Grandmother’s share their story and experience when their granddaughter Emma is diagnosed with JM.
Sari’s Story
Sari’s pain began in September of 2018, during gymnastics practice. It started in her shoulder. She didn’t give it much thought. But then it worsened, soon becoming constant. One night, she was on gymnastics bars continuing her work after practice. She wanted to execute a particular skill, but the pain stopped her from completing the […]
Vamorolone FAQs in JM
With the looming FDA approval of the drug vamorolone in Duchenne muscular dystrophy, there are questions surrounding the drug’s status for trials in juvenile myositis. We have consulted with JM experts on the potential implications of a pending approval for the drug in another disease and what this currently means for JM patients living in the U.S.
Embedded Behavioral Health Care in a Center of Excellence
A recently published study on integrating mental health care into a pediatric rheumatology specialty clinic, supported by the Cure JM Foundation, concluded that the need for mental health care is great and despite the challenges, with the coordination of various stakeholders, it is possible. Published in Frontiers, the principal authors were Dr. Susan Shenoi, a pediatric […]
Lemons To Lemonade For Kids
Our Story – Humble Beginnings Twenty-one years ago, Cure JM co-founders Tom and Shari Hume set up the Foundation’s first-ever DIY fundraiser to seed important new research funding. What was the fundraiser of choice? Considering the couple had young children, a lemonade stand was the perfect fit to launch a rare disease nonprofit during humble […]
Balancing Work and Caregiving: Strategies for Working Parents of Children with Juvenile Myositis
Balancing the demands of a career with the responsibilities of caregiving is a challenging task for any parent. For those with a child diagnosed with juvenile myositis (JM), a rare autoimmune disease affecting children, the challenge is heightened. Juggling work commitments while providing the necessary care and support for a child with JM can be taxing. In this article, we hope to provide you with a few effective strategies and insights to help working parents navigate this delicate balance.
“Ask the Doc” – Sun Protection Tricks & Tips for Summer 2023
With summer underway, we are honored to share our latest “Ask the Doc” Town Hall on Sun Protection Tips and Tricks for Summer. In this session, Shelia Angeles-Han, MD, MSc, and Kalyani Marathe, MD, MPH of Cincinnati Children’s Hospital, share the importance of sun protection for JM patients.
Sun Protection Tips & Tricks: What Parents, Grandparents, and Patients Need to Know
Ask The Doc: Why Exercise and Nutrition Are Important In JM
We are honored to share this insightful presentation and Q&A on the importance of exercise and nutrition in treating juvenile myositis with Dr. Brian Feldman of The Hospital for Sick Children and the Cure JM Clinical Care Network.
What role does exercise and nutrition play in JM treatment? When should JM patients be cleared for exercise? What effects do exercise and nutrition have on disease outcomes?
Caring for Smiles with JM: Navigating Dental Health Challenges with a Suppressed Immune System
As Cure JM parents, we know that the disease and medications often can cause a cascade of other issues. One issue many of our families see is poor dental health. Yes, a suppressed immune system can affect dental health and teeth in several ways. Since the immune system plays a crucial role in fighting infections and maintaining overall health, its […]
Abatacept Trial Concludes With Favorable Results In JM Treatment
A clinical trial treating patients with juvenile myositis with the drug abatacept resulted in lower disease activity and clinically significant responses in most patients. The trial was conducted at the Cure JM Center of Excellence at George Washington University, and preliminary results were presented at the Global Conference on Myositis. Abatacept was generally well tolerated […]
Cure JM Research Consortium Receives Prestigious Chan Zuckerberg Grant
The Chan Zuckerberg Initiative has awarded Cure JM and a consortium of Cure JM-funded researchers a coveted $2 million rare disease research grant to identify new biomarkers in JM and improve precise, personalized care through the identification of cell-to-cell interactions that drive inflammation in juvenile myositis.
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 […]
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.
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.
2025 Cure JM Family Conference
We are excited to announce that the Cure JM National Family Conference will be back in 2025! Join us for three days with world-class JM researchers, engaging sessions for all, and social time to connect with new friends. The 15th Annual Cure JM National Family Conference is taking place June 27th -June 29th, 2023, in Chicago, Illinois.
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.
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 […]