Chiari malformation
Twelve organizations, from patient-led nonprofits to major pediatric centers, for children and families affected by Chiari malformation and related syringomyelia.
A Chiari malformation is a condition in which brain tissue extends into the spinal canal. It often accompanies craniosynostosis; Alex had two Chiari decompression surgeries before he turned four. For medical care, start with Johns Hopkins, CHOP, Seattle Children’s, Stanford and The Chiari Institute. For support and community, ASAP, Bobby Jones CSF, Conquer Chiari, WACMA and The Chiari Project offer peer groups, forums, conferences and educational libraries. ASAP and Bobby Jones CSF also fund research.
Patient-led and advocacy organizations
American Syringomyelia and Chiari Alliance Project (ASAP)
The largest U.S. nonprofit dedicated to Chiari malformation and syringomyelia, providing patient guides, annual conferences, local support groups, scholarships and research funding.
asap.orgBobby Jones Chiari and Syringomyelia Foundation
Funds research, education and advocacy, and offers patient handbooks, webinars, community support and a physician-finder tool.
bobbyjonescsf.orgConquer Chiari
Patient-friendly educational libraries, pediatric resources, school accommodation guides, personal stories and community events.
conquerchiari.orgWorld Arnold Chiari Malformation Association (WACMA)
A global organization offering awareness, education and community support for individuals and families affected by Arnold-Chiari malformations.
wacma.orgThe Chiari Project
A community-driven nonprofit focused on pain education, youth outreach, the Chiari Kids initiative, creative programs and regional peer support.
chiariproject.orgThe Brain Charity (UK)
Chiari malformation supportCounseling, peer befriending, support groups and educational resources for people living with Chiari malformations in the UK.
www.thebraincharity.org.uk
Medical centers and clinical resources
Children's Hospital of Philadelphia
Chiari ClinicA leading pediatric Chiari center providing clinical care, caregiver resources and referrals to trusted advocacy organizations.
www.chop.eduJohns Hopkins Medicine
Chiari Malformation CenterMultidisciplinary pediatric and adult Chiari care, including expert surgery, telemedicine appointments and integrated research.
www.hopkinsmedicine.orgStanford Children's Health
Chiari malformation resourcesCurated Chiari resources, links to major U.S. organizations and support programs for families traveling for care.
www.stanfordchildrens.orgChild Neurology Foundation
Chiari malformationsClinical overviews, research and trial information, and trusted links for families, caregivers and providers.
www.childneurologyfoundation.orgSeattle Children's Hospital
Chiari malformation informationComprehensive pediatric guidance on Chiari malformation, including diagnosis, surgical options and post-operative care.
www.seattlechildrens.orgThe Chiari Institute (Great Neck, New York)
A medical center and research institute specializing in the treatment of Chiari malformation and syringomyelia.
thechiariinstitute.org
The Alexander Foundation has found these sites helpful. We list them as a starting point, not an endorsement, and we encourage every family to decide for themselves what is useful. Nothing here is medical advice.
Two ways to take the next step
You are not alone in this.
If your child has Cloverleaf Syndrome or another craniofacial condition and the bills are piling up, tell us what is happening. We help where we can, and we will point you to people who can help with the rest.
Every dollar reaches a family.
Nobody at the foundation is paid. Apart from minimal supplies and tax filing, every gift goes to families, hospitals, schools and books that change how children treat each other.