Conquering Chiari One Parade At A Time…
Spreading awareness to the community, about chiari malformation, seems to have become my life mission! The more I get out and talk about it...the more people seem to appear who have it and thought they were alone. What an awful feeling that must be. Wondering what chiari malformation is?
Chiari (pronounced Kee-R-ee) is a medical condition where the brain collapses below the base of the skull. It compresses the spine and brain stem causing a whole host of painful neurological issues. Rarely, does someone only have chiari. It most likely comes with other diseases as well.
I have shared my journey, since I was diagnosed over 2 years ago. I've been very open about the surgeries I've had and will continue to have. I've shared my buddy, Connor's story. I will continue to share and share until the day comes that I, or anyone, can go to their doctor in Maine and won't have to spell chiari or explain to them what it is I have. I will continue to fight so that people with chiari can get proper care in Maine and not have to travel. I will continue to fight for a cure!
Yesterday, I marched with my fellow chiarians. People I wouldn't have learned to know and love, if not for chiari, and now have become my family.
If you want to help us in our journey to find a cure for chiari malformation, join us at our annual Conquer Chiari Walk Across America on September 16th at the Quarry Road Recreation in Waterville. Consider having your business sponsor the walk, you can sponsor a walker or join us. Get all the information at conquerchiari.org .
Keep a look out on where we'll be next.