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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:
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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.
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Raise awareness among family members so that they can better understand what
a patient is going through.
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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.
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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
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More background presentations on specific topics such as surgery, recovery,
and coping with residual symptoms such as pain.
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An extensive Frequently Asked Questions (FAQ) to help people come up to
speed quickly
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A consolidated medical glossary so you can quickly look up words you don't
know
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Past articles organized by topic as well as chronologically
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We are working on a way to provide a list of doctors, although there are
many complications with trying to do this
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11 issues a year of the newsletter
Book
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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
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We have the specific goal of publishing an article on Chiari (and SM) in a
major, popular publication this year.
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We will develop materials that can be downloaded from the website, so that
anyone interested in talking about Chiari and syringomyelia can do so.
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I personally will try to speak to medical and nursing students at the local
University.
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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 |