I read an amazing story in Discover magazine awhile back.  A 56-year old German man who had lost his jaw to cancer was given a new one.  Not a synthetic one, a real one; and not from an animal, it was custom grown from his own body.

The man's surgeon used computer imaging software to build a titanium mesh mold which precisely matched the jaw he had lost.  Stem cells were then taken from the man's bone marrow and placed onto the mold.  The entire thing was inserted into the man just below his shoulder blade.  Several weeks later, the stem cells had grown into a full jaw, which was removed from his back and attached to it's proper place.  Four weeks after the operation, the man ate solid foods for the first time in 9 years.

I found this story to be incredible for several reasons besides the obvious human interest angle.  The blend of technologies used is as exciting as the end result.  Computer software combined with stem cells (harvested from the patient himself) were used to replace, perfectly, a body part that was lost. 

What is the relevance to our Chiari community?  I don't know if it is possible, but maybe one day it will be easy to identify children who will develop Chiari because their skulls are not developed properly.  Maybe it will be possible to model exactly how their skulls should be shaped and to grow replacement pieces.  Maybe, Chiari can be stopped in people before it becomes a problem. 

I know it sounds far-fetched, and it probably is for a thousand reasons, but the fact remains that the pace of technological advances is staggering.  Unfortunately, as our Year In Research report makes all too clear, the application of these advances to understanding Chiari and SM is lagging woefully behind.  Relative to other diseases, there is virtually no attention being paid to Chiari. 

We, as a community, can not sit around and wait for something to happen; we must become proactive.  The C&S Patient Education Foundation is committed to improving the outcomes and experiences of Chiari and syringomyelia patients through education, awareness, and research.  We began with education and built this website, which by providing accurate, up-to-date, and easy to understand information has helped thousands and thousands of people.

In 2005 and beyond we will continue our education efforts (through this website and by publishing a book), but will also turn our attention to awareness and research.  We are currently evaluating ideas to raise awareness and plan to launch a major campaign in this coming year.  On the research side, we have assembled a top-notch team of experts to help us craft a research agenda which will not be pie in the sky, but which can have a real impact on people's lives by creatively applying resources where they can produce the best results.

I, and the rest of the Foundation team, recognize that there is a lot of work to be done, but we are just getting started.  As we grow, expand, and launch new projects and services, we will attack the problem with the same energy, creativity, and professionalism that we used in creating this website.  We hope you will grow with us; together we can make the impossible happen.

During this time of giving, please consider a Tax-Deductible Donation and help us make a difference!

-- Rick Labuda