Support for Families Living with Juvenile Myositis
What Was Lost in the Fire: The Other Side of Resilience for Siblings of Children with Rare Disease
Siblings of children with rare disease are often described as resilient, empathetic, and strong beyond their years, and they are. But behind those strengths are
When Rare Disease and Anxiety Collide: How SPACE Can Help
By definition, a rare disease affects a very small percentage of the population. Juvenile myositis certainly fits that criteria, impacting approximately 1 in 500,000 children. For
The Loneliness We Don’t Talk About
By Ronda Thorington, MA, LCP Summary:In rare disease caregiving, loneliness often hides in plain sight between appointments, responsibilities, and the need to stay strong. This
Finding Calm in the Holiday Chaos: Managing Stress as a Caregiver
The holidays are often pictured as joyful and peaceful with images of glowing lights, cozy mornings, and laughter around a table. But for many families,
The Best Present Is Your Presence: How to Set Limits This Season
The holidays are often described as the most wonderful time of the year; often full of warmth, family, and togetherness. But for caregivers, the season can
The Signs We Don’t Always See: Recognizing Emotional Distress and Finding Support
Living with Juvenile Myositis means becoming an expert in change. Cure JM parents and caregivers learn to track labs, watch for weakness, manage medications, and
July 2025 Town Hall – Managing Anxiety & Promoting Wellbeing for JM Patients and Parents
Join us for this powerful Town Hall featuring Dr. Aviya Levy, a nationally recognized pediatric rheumatologist and mental health advocate, as she explores practical strategies
Talking Through the Tough Stuff
Parenting requires a lot from us: love, patience, sacrifice, and resilience, to name a few. Add to that the moments when we must sit with
Mental and Emotional Health FAQ for Caregivers
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
Resources for Emotional and Mental Health
Having a chronic and rare disease is a challenging experience for anyone to go through, and especially difficult on children and adolescents.
Emotional and Mental Health: Getting Help
There are resources available for mental health care though it can take awhile to research them, access them, and follow up on the care.
Impact of Juvenile Myositis on Mental Health
Drs. Kaveh Ardalan, Andrea Knight and Alison Manning discuss juvenile myositis’ impact on mental health.
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