As you may or may not be aware, the Foundation recently announced that it has launched a campaign to 'Conquer Chiari'.  The Conquer Chiari campaign is a comprehensive, multi-faceted strategy, combining patient education, awareness, and research, which will have a dramatic impact on the lives of patients and their families.

Our opening salvo in the battle to Conquer Chiari is this website.  Already a tremendous resource of information, we have added to the patient education material available, reorganized the information so that it is easier to access, and moved the site www.conquerchiari.org.  If you haven't yet had the opportunity, I encourage you to explore the new site. 

It is our goal that if a question about Chiari or syringomyelia has an answer, that answer can be found on this site.  If a question doesn't have an answer, that is important to know as well, and we want to make sure that all the important issues can be clearly understood. 

Of course we will continue to publish Chiari & Syringomyelia News, but we will continue to expand and improve the site in other ways as well.  Building on the popular Overview presentation, I am creating a series of short presentations which will cover the most recent thinking and ideas on specific topics (such as Symptoms, Diagnosis, Surgery, Pain, and Living With Chiari).  The presentations will link back to relevant articles in the newsletter archives and act as a bridge to the more detailed information available there. We are also planning on creating a Pediatric section of the website to deal with issues specific to children and their families dealing with Chiari and SM.

Our goals for awareness are simple:

1) Make Chiari something that people have heard of
2) Reduce the average time from first symptom to diagnosis to less than 2 years

We believe that reducing the time between symptoms and diagnosis will have a tremendously positive impact on the long-term outcome of patients and will likely reduce the number of new cases of syringomyelia as well.  Raising awareness will involve handing out literature, speaking at events, publishing articles in major magazines, and numerous other ways to spread the word.

On the research front, we are working on a research agenda and process to award monies, but some of our goals are:

• More Federal money focused on Chiari and SM

• More, and varied, researchers focusing on the subject

• Understand the underlying causes and mechanisms of CM/SM

• Standardize and simplify current surgical procedures

• Minimize patient trauma

• Develop non-surgical treatments

• Characterize the CM/SM experience - who has what

• Understand and mitigate secondary issues, such as learning disabilities, emotional impact, etc.

• Understand and mitigate residual symptoms

• Develop a single, cheap, objective test to say if someone has symptomatic Chiari, how it should be treated, and whether the treatment was successful.

These are only a few of our ideas, and in the near future we will publish  a more detailed strategic plan to Conquer Chiari so that everyone knows what we are currently doing and what we hope to accomplish in the future.

For far too long Chiari has been a force that has destroyed people's lives, robbing them of their health, their jobs, their families, and their dreams.  It's time to fight back and it's time to win.  Our goal is ambitious, our plan is aggressive, but if everyone becomes involved - if you become involved - we can make it happen, we can Conquer Chiari.

If you would like to Join The Battle, please fill out the Volunteer Form, and welcome to the fight.

-- Rick Labuda