AWARENESS HUB

Bobby Jones Chiari & Syringomyelia Foundation

articles & updates

When the Patient is a Child

For too many families, Chiari malformation enters life in childhood. A diagnosis that sounds rare and confusing suddenly becomes the backdrop to growing up—filled with MRIs, surgeries, and school days disrupted by pain and fatigue.

Children with Chiari show extraordinary resilience, but behind every young patient is a family that’s stretched thin: parents juggling advocacy, siblings adjusting to shifting routines, and caregivers learning to navigate a complex condition that few around them understand.

Caring for Kids, Caring for Families

Chiari in children doesn’t just impact the patient—it reshapes the whole household. That’s why caregiver support is just as critical as medical care. Parents and guardians often put their own well-being aside to manage appointments, advocate in schools, and handle daily care.

This Chiari Awareness Month, we want to remind families: caring for your child means remembering to care for yourself too. Even small steps—resting when you can, seeking out support groups, or allowing others to help—make an enormous difference in sustaining the energy and compassion that kids need most.

How BJCSF Supports Pediatric Patients

Your donations make it possible for us to:

  • Fund research into pediatric Chiari to improve diagnostics and treatments
  • Bring together doctors and scientists at symposiums to share the latest breakthroughs
  • Provide conferences and educational resources for parents who need answers and connection
  • Support advocacy programs that empower families to speak up and be heard

Why September Matters

Chiari Awareness Month is our chance to make sure children and families living with this condition are not invisible. With your help, we can build bridges between research, providers, and patient families—bridges that lead to better care and more hopeful futures.

👉 Be part of the change. Donate today to support pediatric patients and their families. Together, we can ensure every child with Chiari has the care, resources, and hope they deserve.