This issue marks a new beginning for Chiari & Syringomyelia News.  From this point forward, every article and every piece of information on the web site will be free.  Why the change?  It's simple, when I first had the idea for the newsletter, I had no idea what the response would be, so I quickly put something together and tested the waters.  Needless to say, the response has been overwhelming and I would like to thank everyone - people who submitted articles, people who provided suggestions, people who sent a note of thanks, and of course the early subscribers - for their support and their help in making the newsletter what it is today.

The response made it overwhelmingly obvious that people are interested in the information that the site and the newsletter provide.  Because of this, I took the necessary steps to form a nonprofit organization, the C&S Patient Education Foundation, which will now publish the newsletter for free.  The foundation will focus on education, awareness, and research, in that order, and has adopted these specific 5-year goals:

1. Build the most comprehensive web-based information portal possible, such that if a question has an answer, it can be found on the site, in plain English.

2. Raise awareness among family members so that they can better understand what a patient is going through.

3. Raise awareness among the medical community so that accurate diagnoses are made earlier and that doctors are not using old information.  Our goal is to reduce the average time from symptom onset to diagnosis to 2 years or less.  This should greatly improve the outcomes of many patients.

4. Raise awareness among the general public.  Our goal is for at least 10% of the general public to be aware that Chiari is a serious neurological condition.

The foundation is governed by a board of experienced and dedicated business professionals, while I will run the day-to-day operations as Executive Director.  And of course, I will continue as Editor and chief author of the newsletter.  It is my hope that this change will not only help more people, but will make the newsletter better and open the door to even bigger, and more effective, programs.

With this in mind, here is a  glimpse of what I, and the foundation, will be working on and what you can expect:

Website

• More background presentations on specific topics such as surgery, recovery, and coping with residual symptoms such as pain.

• An extensive Frequently Asked Questions (FAQ) to help people come up to speed quickly

• A consolidated medical glossary so you can quickly look up words you don't know

• Past articles organized by topic as well as chronologically

• We are working on a way to provide a list of doctors, although there are many complications with trying to do this

• 11 issues a year of the newsletter

Book

• I have begun working on a book, "A Patient's Guide To Chiari & Syringomyelia" which will be just that.  Written in the same easy to understand style as the newsletter, the book is intended as a resource for both new and existing patients.  The foundation will publish the book so that 100% of the proceeds can be used to fund other programs.

Awareness

• We have the specific goal of publishing an article on Chiari (and SM) in a major, popular publication this year.

• We will develop materials that can be downloaded from the website, so that anyone interested in talking about Chiari and syringomyelia can do so.

• I personally will try to speak to medical and nursing students at the local University.

• We are in the early stages of examining how best to raise awareness among Primary Care Providers

Research

• Working with our Scientific Advisors, we will publish a research agenda

• We are in the very early stages of a really exciting idea designed to achieve the goal of making an accurate diagnosis in 2 years or less

• As our monetary resources grow, we will fund research to support our goals

As you can see, we have a busy agenda, but that is because there is so much to do.  With the emails I receive, I am reminded everyday of not only the pain and suffering that people often needlessly endure, but also of the hope that exists and the excitement and relief people feel when they are finally provided with information that is easy to understand and their questions are answered.

Finally, none of this will be possible without money.  Since all the information is now free, we need your help to continue the newsletter and launch these other programs.  Every dollar counts and can help people in their battle against these diseases.

Please support Chiari & Syringomyelia News and the C&S Patient Education Foundation by making a donation.  Thank you.

- Rick Labuda