1	C&S Patient Education Foundation Dedicated to improving the experiences and outcomes of Chiari & syringomyelia patients through education, awareness, and research
2	Mission
3	What It’s Like Today Patient Experience Often see many different doctors, get bounced around the medical system Sometimes go years without diagnosis, patient is told it’s all in their head Conflicting – and often incorrect – information from doctors Bad feelings develop between patient and providers Confusion about what to do, what the future holds Very little guidance on what to expect for recovery Very little guidance on how to cope with persistent symptoms If initial surgery/treatment fails, some doctors essentially give up leaving patients on their own Patient Outcomes The longer a patient goes without diagnosis/treatment, the less likely a successful outcome and the higher the chance of persistent symptoms Lack of standardized surgical technique contributes to high rate of surgical failure Research shows poor communication with doctors negatively impacts medical outcomes Long term recurrence of symptoms is well documented
4	The Problem Being diagnosed is a mental and physical shock Fear and confusion, mixed with physical symptoms, are overwhelming The conditions are poorly understood Basic terminology, diagnosis and treatment are not agreed upon It is difficult for friends and family to understand No one has heard of it, symptoms may not be visible Up-to-date, useful information can be hard to find Most web sites offer the basics, don’t go into the real issue; chat rooms tend to deal in worst case scenarios
5	Unfortunately… Many doctors are not familiar with Chiari (CM) and syringomyelia (SM) or rely on old and inaccurate information People go years without a proper diagnosis Important symptoms are dismissed; patients are labeled crazy Surgical failure rate >20% for some surgeons Plus, even the experts don’t agree on many things When is surgery necessary? What technique should be used? There is little scientific basis for treatment decisions, so how do you pick a doctor? There is no test which says who should have surgery or whether the surgery worked
6	A Formula For Change
7	Valuable Information Is Out There Over 250 research papers were published relating to SM in the last 3 years
8	Breaking Down The Wall
9	Conquer Chiari Website Extensive Patient Education materials including presentations, FAQ, Education Sheets, etc. On-line, monthly newsletter Latest research is reviewed and summarized in Plain English Interviews with medical professionals and researchers In-depth features on topics such as Acupuncture and MRI’s First-person accounts from readers
10	Overview Presentation Short presentation which provides the basics about CM/SM in an easy to understand format Definitions, diagnosis, treatment options, surgery, recovery, how many people have it, state of research Most popular pages on the web site Lots of positive feedback:
11	Coming Soon A Patient’s Guide To CM/SM Comprehensive book for patients and family members Same easy to understand style as the newsletter Will be published by the Foundation; proceeds used to support programs On-Line Meeting Place Meet other people like you and make friends Additional Awareness Activities Fund Research Programs Developing research agenda and process Raising money
12	Who We Serve
13	The Foundation Team Rick Labuda, Executive Director Founder, Chiari & Syringomyelia News and the Foundation Authored over 50 articles on CM/SM with first hand experience as a patient BSEE and 15 years experience in engineering, marketing, and management for high-tech companies Board of Directors Tom Jones, President MBA from University of Pittsburgh; Founding Partner of Bluetree Allied Capital; over 20 years of business and management experience Rich Kushner, Vice President Master’s in Management and Policy Analysis from CMU; VP Industry Relations at Marconi; Board Director of American Respiratory Alliance Mark Tomczak, Treasurer Certified Public Accountant (CPA); VP Finance, Marconi; over 20 years of world-wide, financial management experience including 6 years at Price Waterhouse Dr. Diane Mueller PhD Nurse Practitioner with extensive neurosurgical and Chiari experience. Research focuses on symptoms and quality of life issues for Chiari patients
14	The Foundation Team - Scientific Advisors Dr. Ghassan Bejjani - Assistant Clinical Professor of Neurological Surgery at the University of Pittsburgh; specializes in treating Chiari and syringomyelia; published several papers on the conditions Dr. Terry Lichtor - Associate Professor of Neurological Surgery at Rush University Medical Center and a Clinical Associate Professor of Neurological Surgery at Loyola University; attending neurosurgeon at several Chicago area hospitals; named one of America's Top Surgeons; holds a PhD and is actively involved in researching Chiari and syringomyelia. Dr. Frank Loth - Associate Professor of Mechanical Engineering at University of Illinois-Chicago; performs research on the dynamics of cerebrospinal fluid flow and how it is affected by Chiari and syringomyelia; published several papers on this topic Dr. John Oshinski - Assistant Professor of Radiology at Emory University; specializes in the imaging and analysis of fluid flow; studied blood flow and cardiac disease extensively and is now using his expertise to study the role of CSF (cerebrospinal fluid) flow in Chiari and syringomyelia as well; registered Professional Engineer
15	Our Promise
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