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 About C&S Patient Education Foundation     About Conquer Chiari     About C&S News

Mission     Team     Coat of Arms     Financial Disclosures (990's)     Contact Us  

C&S Patient Education Foundation

The C&S Patient Education Foundation is a 501(c)(3) non-profit organization dedicated to improving the experiences and outcomes of Chiari and syringomyelia patients through education, awareness, and research.  The Foundation publishes Chiari & Syringomyelia News so that patients and their families have access to the information they need to take control of their healthcare and make informed, intelligent decisions. 

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Conquer Chiari

Conquer Chiari is our informal name, our goal, and our website.  Chiari and syringomyelia are complicated diseases, which require complex solutions.  No single action will beat them, but the combined efforts of many people on many fronts will.  For far too long these diseases have destroyed people's lives, its time to fight back. 

Education, awareness, and research are our weapons.

Compassion and conviction are our guides.

Strength, courage, and determination will sustain us.

We will win.

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Chiari & Syringomyelia News

Chiari and syringomyelia are serious neurological conditions which have a profound impact on those they affect; impacting not only patients, but their family, friends, and loved ones as well.  Everyone who is touched by these conditions is thrown into a confusing, overwhelming world of neurosurgeons, MRI's, and medical jargon. 

Whether they are newly diagnosed, or have had the condition for years, everyone faces a near constant array of questions and decisions:  Should I have surgery?  What surgical technique will be used and why? What doctor should I see? Is he running the right tests? Will my symptoms go away? What will my quality of life be?  How will this affect my family? Unfortunately, there are no easy answers.  Doctors are beginning to question the basic definition of a malformation, there are numerous theories on syrinx formation, and there is wide variation among surgical techniques.

Despite the many questions, our understanding of these conditions is growing and evolving rapidly.  Researchers from around the world are focused on understanding and developing the best treatments possible.  With their hard work, new ideas and theories are constantly emerging to be debated, tested, and hopefully move us one step further along the path of knowledge.

Chiari & Syringomyelia News is a bi-monthly, on-line, publication which through a combination of research updates, in-depth analyses, and interviews, provides the latest information, in an easy to understand format.  The newsletter archives contain hundreds of articles on Chiari and related topics and are the single most comprehensive source of information available about Chiari.

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Mission

The C&S Patient Education Foundation is dedicated to improving the experiences and outcomes of Chiari & syringomyelia patients by:

1. Providing accurate, up-to-date, and easy to understand information to patients so that they can take control of their health care and make intelligent, informed decisions

2. Raising awareness among family, friends, and the general public so that they can understand what patients are going through and are better able to provide support

3. Raising awareness among, and providing accurate, up-to-date information to, the medical community, so that errors in diagnosis and treatment are reduced

4. Sponsoring research to advance the understanding of these conditions and the importance of patient education in general
    

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Team

Rick Labuda, Executive Director -
Rick started Chiari & Syringomyelia News in August, 2003 and has been the editor and primary author of the newsletter since it's inception.  Rick is also the founder of the C&S Patient Education Foundation.  As a Chiari and syringomyelia patient, Rick knows first-hand what many people go through as they confront these diseases.  In addition to his work with the newsletter, Rick was one of the first members of the ASAP (American Syringomyelia Alliance Project) Research Committee and has worked first-hand with researchers.  Rick holds a BS in Electrical Engineering and has over 15 years experience in engineering, marketing, and management for high-tech companies.

Rich Kushner, President & Director -
Mr. Kushner is Vice President, Market Strategy forSelect International and has over 25 years of business and marketing experience.  Mr. Kushner is active in the non-profit sector and is a Director of the American Respiratory Alliance.  He holds a Master's in Management and Policy Analysis from Carnegie Mellon University.

David Lee, Vice President & Director-
Mr. Lee is a business and high technology professional with over 20 years of experience across a variety of industries and vocations.  He is an expert in the application of cutting edge, collaborative business tools and has extensive experience with internet and telecommunication related technologies. Mr. Lee holds a degree in Business from Boston University.

Mark Tomczak, Treasurer & Director -
Mr. Tomczak is a Certified Public Accountant (CPA) with over 25 years of world-wide, financial management experience, including 6 years at Price Waterhouse.  Mr. Tomczak is currently Vice President of Finance and Chief Financial Officer at Inmedius, Inc. a global leader in delivering innovative, performance-oriented applications and services that capture, create, manage and deploy technical information assets.

Dr. Diane Mueller, Director -
Dr. Mueller achieved her Doctorate in Nursing from Case Western Reserve University and has over 25 years of neurosurgical nursing experience.  She is currently with the University of Missouri and during her career  has treated hundreds of Chiari and syringomyelia patients.  She has seen first-hand what these conditions can do to people and is active in researching Chiari as well.  She is specifically interested in quality of life issues and is currently involved in several  research projects. 

Scientific Advisors -
In order to remain independent, and adhere to our policy of not aligning with a specific doctor or hospital, Conquer Chiari does not have a formal medical or scientific advisory board.  However, Conquer Chiari has built an extensive network of contacts with the medical and scientific leaders in the world wide Chiari community, and consults with these experts on an ongoing, as needed basis.  Since we provide significant research funding, we believe that it is important to maintain a constructive, but arms length, relationship with the medical and scientific community in order to avoid conflicts of interest. 

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Coat Of Arms

A Coat of Arms is a representation of a family's heritage and contain symbols which define them; that is why we chose a Coat of Arms to represent the Conquer Chiari effort.:

The Conquer Chiari Coat of Arms contains four symbols on its shield representative of our mission:

1) A ribbon representing Awareness
2) A book with magnifying glasses representing both Education and the search for answers
3) A microscope representing Research
4) The Rx symbol representing a Cure

Behind the shield lie a Caduceus and rising sun.  The Caduceus - a well known symbol for medicine - represents our partnership the medical community, while its sword like shape represents both the surgical aspect of the disease and invites to take the fight to our enemy.  The sun, rising behind the shield, represents the promise of a day when Chiari and syringomyelia are conquered.

Finally, beneath the shield lies a banner with our call to action, "Join The Battle"; for this is not a fight that can be won alone.  It will take the combined efforts of each and every one of us to put an end to this fight once and for all.

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Financial Disclosures

As a public charity, Conquer Chiari is required to make our financial statements freely available to the general public; below are our yearly tax filings with the IRS (form 990s).  We take great pride in delivering effective programs with very low overhead.  This means that donors to Conquer Chiari really are getting the most for their money.

2008 990 (PDF)     2007 990 (PDF)     2006 990 (PDF)      2005 990 (PDF)  

2004 990 (PDF)      501c3 Letter (PDF)   

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Contact Us

We want to hear from you. 

If you have a question for Conquer Chiari regarding Chiari or a related topic, or about the foundation and our programs, call or email:

724-940-0116              director@conquerchiari.org

If you have an original submission for Chiari & Syringomyelia News please email with no attachments.  We are looking for both Perspectives (personal stories) and You Gotta Laugh (funny anecdotes).  To get a better idea of what we are looking for, please review the newsletter archives.

If you'd like to use regular mail, send to::

Conquer Chiari
320 Osprey Court
Wexford, PA 15090   

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