What They Are

The Parent Education Sheets are one-page documents intended to answer the most common questions parents have when their child is first diagnosed. They cover the basics of the conditions, the symptoms, diagnosis, surgery, and what to expect. The information is in bullet fashion and is not intended to be comprehensive, but rather to give a good overview.

The Parent Awareness Sheets are one-page, high-level overviews of Chiari. They are meant to give you - the reader - something that can be easily emailed, or printed out and handed to, family members, friends, co-workers, bosses, teachers, principals, dentists, etc. to give them a better idea of what a person with CM/SM is going through.

Pediatric Chiari Education Sheet
(click image for PDF)

Chiari Education Sheet
Pediatric Chiari Awareness Sheet
(Click image for PDF)

Chiari Awareness Sheet

The Importance of Awareness

One of the major obstacles that Chiari and syringomyelia patients face is that it seems like no one has heard of the conditions. Once thought to be rare, MRI's have dramatically increased estimates of the number of people with Chiari (~300,000 in the US). This lack of awareness creates an additional burden for patients as they try to explain to family members, friends, employers, etc. what they are going through.

In addition, the lack of general awareness has translated into a lack of research dollars from the US government. Diseases which affect about the same number of people receive millions of dollars of federal support each and every year.

It's time to raise our voices, raise our profile, and make people aware.