Support for Families Living with Juvenile Myositis
A friend once compared raising children to getting an education: he said parenting through the high school years is like prepping for finals in your
Sixteen years ago, when my daughter was diagnosed with a rare autoimmune disease, I knew I was scared. I knew I was overwhelmed. I knew
What to Expect When You Weren’t Expecting This
When I was expecting my first child, my favorite reference book was What to Expect When You’re Expecting. Every twinge, every movement, every bout of
Back to School…Again
It feels like I blinked twice and summer disappeared. Just a few weeks ago we were looking forward to slower mornings, fewer alarms, and maybe,
Summer on Our Own Terms
Summer used to fill me with dread. As the parent of a child with a rare disease, the season my other kids lived for was
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
April 2026 Town Hall – Supportive Parenting for Anxious Childhood Emotions with Dr. Eli Lebowitz
Parenting a child with chronic illness often means carrying more than you imagined—anxiety, treatment pressures, and the constant effort to protect and soothe can leave
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
Join Cure JM
Membership is free and we’ll connect you with a network of support, encouragement, and resources.
