Open Letter to the Chiari Community

Wed, 05/30/2012

Hello everyone,

Thank you for your support of the International Chiari Association (ICA). I'd like to make it clear that the ICA is NOT connected to any other Chiari nonprofit, past or present, nor are we a nonprofit making a comeback under a new name. The idea for starting the ICA first came about on February 18, 2011, while having lunch with Robert Mislang and Jason Floyd, two friends that I have known for more than 20 years. It was the direct result of a lack of available resources for newly-diagnosed Chiarians. With the assistance of Mislang and Floyd, I founded the ICA on April 8, 2011.

Since 2010, I have been personally involved in an effort to lend support and advice to a number of Chiarians who were in need of answers. I felt I was in a unique position to provide this assistance because I myself had just gone through the entire process typical of those with Chiari: going from doctor to doctor, to finally being diagnosed, to educating myself about Chiari and determining the best course of action for my treatment. I eventually found, after getting several opinions, that posterior fossa decompression surgery was the right answer for me because of the severity of my symptoms. A few years later, after counseling several Chiarians seeking guidance, I realized that there was so much that needed to be added to the Chiari community. This was especially true for the newly-diagnosed patients who were in need of direction. I understand the frustrations that Chiarians face and I want to provide the resources that I wish were there for me. Therefore, out of necessity, the ICA was born.

In the last year, we have accomplished many things in a short period of time and we are just getting started. The ICA has a volunteer team of 24 members (board members and advisors combined). As someone with Chiari, I couldn't do it without them. They have collectively contributed thousands of hours in a tireless effort to bring the ICA into existence and I can't thank them enough for all their hard work. We are a team dedicated to helping individual Chiarians in their day-to-day life as well as their long-term health goals. Promoting Chiari Awareness is another facet of our organization that we feel very strongly about and our heavy use of purple (the color of Chiari Awareness) is an effort to do just that. We always have and always will use the color purple. I often tell people, "Some day I want people to think Chiari when they see a purple ribbon, just like they think breast cancer when they see a pink ribbon."

I do not collect a salary and I don't expect to for at least a few years. My goal is to build this international organization to help Chiarians around the world.

The International Chiari Association (ICA) is a 501(c)(3) nonprofit organization and we were approved for this status on September 30, 2011. A copy of our 501(c)(3) Letter can be found at . All donations are tax-deductible.

It is my opinion that ALL nonprofits should be easily accessible to the public as that is the main reason for their existence. Some people are surprised that when they call the ICA, a person actually answers the phone. The ICA Headquarters are open from Monday through Friday, from 10 a.m. to 4 p.m. PST, and we promptly return messages and respond to e-mails, etc. We always have and always will take great pride in being accessible. If you have any questions or concerns, please feel free to contact us. Our contact information can be found at the bottom of this e-mail.

I invite you to visit our web site (, "Like" us on Facebook ( and subscribe to the International Chiari Association Network (ICAN)( We have big plans for ICAN, which features many Chiari-related videos.

The ICA will continue to bring exciting new things to the Chiari World in an effort to create a brighter future for Chiarians everywhere. Thanks, as always, for your support.

All the best,

Pete Dal Bello
International Chiari Association (ICA)

Pete Dal Bello
International Chiari Association (ICA)
27 W. Anapamu St., #340
Santa Barbara, CA 93101 USA

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Phone: (805) 570-0-HUG (570-0484)
Fax: (815) 301-6541

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Thanks for the effort that you made by creating an open letter to the Chiari Community. This is something man.
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A supportive Chiari Community is very important, all over the years, they have been giving up to date information to the public from their reliable resources. - Dan Sciscente