Over 300,000 Americans live with Chiari—many dismissed or misdiagnosed. We're building the community they deserve. Join 1,200+ supporters amplifying their voices.
Search our comprehensive map of verified neurosurgeons, EDS experts, and local support groups across all 50 states.
Chiari Warrior • Lived Experience
In May 2024, I was diagnosed with Chiari malformation after months of crushing headaches, vision problems, and symptoms so severe I feared I wouldn't survive. I couldn't work. I couldn't drive. My life was collapsing.
Multiple doctors told me my herniation "shouldn't cause symptoms"—even as I documented 23 debilitating effects. One recommended a surgery that would have left me paralyzed. I was dismissed, gaslit, and told to "just wait."
Walking through dismissal, misdiagnosis, and the fight to be believed is dark. We founded the Chiari Voices Foundation so no one with Chiari has to battle alone—to educate, advocate, and amplify the voices of those whose suffering is too often overlooked.
Learn about Chiari Malformation, a neurological condition affecting thousands.
Chiari Malformation is a structural defect where brain tissue extends into the spinal canal, often causing debilitating symptoms that impact daily life.
Many patients face dismissal, delayed diagnosis, and uncertainty. Our mission is to provide clarity, support, and hope through education and community.
Why we exist and what drives us forward.
Give voice to Chiari warriors who've been dismissed, doubted, or told their pain isn't real.
Arm patients with the knowledge to advocate for themselves when doctors say "it's all in your head."
Fight for the misdiagnosed, the under-treated, and those still waiting for answers.
See exactly how your donation creates change for the Chiari community.
Provides one newly diagnosed patient with a comprehensive Chiari education packet
Funds a month of virtual support groups connecting patients and caregivers nationwide
Powers a targeted advocacy campaign reaching lawmakers to improve Chiari healthcare access
How we create impact in the Chiari community.
Empowering patients with knowledge about Chiari, treatment options, and self-advocacy.
Building connections among patients, families, and caregivers facing Chiari.
Championing better healthcare policies, research funding, and patient rights.
Your gift today ensures no Chiari patient fights alone—for diagnosis, treatment, or hope.
Chiari Voices was born from a patient–caregiver team who turned their own journey into a mission to ensure every voice is heard.
Founder & Chairman of the Board
Eric Crosby, MPA, serves as Founder and Chairman of the Board of the Chiari Voices Foundation.
Drawing on his BSBA in International Business, MPA in Non-Profit Management, and lived experience as Derek's caregiver, Eric is committed to ensuring both patients and caregivers feel seen, heard, and supported.
Learn more about Eric
Founder & Executive Director
Derek Crosby is the Founder and Executive Director of the Chiari Voices Foundation.
With a background in technology and business and more than 10 years at the National MS Society, Derek brings deep insight into the realities of complex, often invisible neurological diseases.
Learn more about DerekReal stories from our community—warriors, caregivers, and advocates.
Every voice matters. Share your story and connect with others who understand your journey.
Share Your StoryTools, guides, and educational materials to support your Chiari journey.
Download our Symptoms Checklist and preparation guides for doctor visits.
Deep dive into decompression surgery, what to expect, and recovery tips.
Search our national directory of neurosurgeons and support groups.
Templates, guides, and strategies for self-advocacy in healthcare settings.
Help us reach our founding goal to launch patient resources, support groups, and advocacy programs in 2026.
Join our community and help us amplify voices in the Chiari community.