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The mission of the International Chiari Association (ICA) is to educate and inform the public about Chiari malformation. It is the ICA's goal to bring awareness and research to this little-known, serious neurological disorder to help those with Chiari and the people that care about them.
ABOUT THE ICA
Welcome to the official web site of the International Chiari Association (ICA). Chiari (kee-AR-ee) malformation is a little-known, serious neurological disorder. I was born with Chiari and it took 36 years before I was finally diagnosed. In 2000, my health forced me to resign from my job as a magazine editor and then I went from doctor to doctor for eight years before an MRI revealed the malformation. I underwent a major surgery on May 11, 2009. While Chiari is still a daily struggle, the operation saved me from needing a wheelchair.
Feeling frustrated at the lack of resources and support for Chiari, I founded the ICA in 2011 with the help of Robert Mislang and Jason Floyd. The ICA is a 501(c)(3) nonprofit organization.
I often tell people that we can't change the past, but we can make things better for the future. That is one of the main reasons why the ICA exists, to help those with Chiari and the people that care about them. Every day, I think about those with Chiari - especially the young children, many of whom have had more surgeries than years of life. I want their future to be better than my own.
The ICA has already done many things in the Chiari World that have never been done before. Over time, there will be many additions to our web site. I am confident that the site will be a favorite of the 300,000 Americans that have Chiari. That doesn't include Chiarians (people with Chiari) that live in other parts of world. Most doctors and nurses in the United States have never heard of Chiari, which means the disorder is even less known in other countries that lack America's resources. One of the ICA's goals is to continue to spread Chiari Awareness internationally. This is why it is called the International Chiari Association.
Since the disorder is not well known, I believe that in a short amount of time we can make great strides in expanding Chiari Awareness to the general public and medical community - both here and abroad. I look forward to the future. By working on these goals, I know that the ICA will make the world a better place.
All the best,
Pete Dal Bello
International Chiari Association