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What Is Conquer Pediatric Chiari?
Conquer
Pediatric Chiari is a focused effort by the C&S Patient Education
Foundation (also known as Conquer Chiari) to bring attention to the unique
aspects of Pediatric Chiari. This website is intended to provide
families with information they can trust to help make important decisions
and also to make them feel less alone while they deal with the challenges
Chiari can pose.
However, Conquer Pediatric Chiari is more than a website. As part of
our research program, the C&S Patient Education Foundation has begun to
focus funds specifically on pediatric research and holds an annual
fundraiser in Washington, DC.
Please
take a moment to learn more about who we are.
Coat of Arms
C&S Patient Education Foundation
Mission
Team
Financial Disclosures
Contact Us
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
Pediatric Chiari effort.
 The Conquer
Pediatric Chiari Coat of Arms contains four symbols on its shield
representative of our mission and programs:
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 is conquered.
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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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Mission
The C&S Patient Education Foundation is dedicated to improving the
experiences and outcomes of Chiari & syringomyelia patients by:
-
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
-
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
-
Raising awareness
among, and providing accurate, up-to-date information to, the medical
community, so that errors in diagnosis and treatment are reduced
-
Sponsoring research to
advance the understanding of these conditions and in the end to Conquer
Chiari
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Team
Rick Labuda, Executive
Director -
Rick is also the founder of the C&S Patient Education Foundation, and has
written extensively on Chiari and related topics in the newsletter and as
the author of Conquer Chiari: A Patient's Guide. As a Chiari
and syringomyelia patient, Rick knows first-hand what many people go
through as they confront these diseases. Rick has organized professional
research conferences and has worked first hand with researchers on
designing research projects and evaluating new results. He 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 for Select
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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Financial Disclosures
As a public charity, C&S
Patient Education Foundation 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
Pediatric 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 Pediatric
Chiari regarding Chiari or a related topic, or about the foundation and
our programs, here's how to reach us:
Phone:
724-940-0116
Fax:
724-940-0172
Email:
director@conquerchiari.org
Mail:
Conquer Pediatric Chiari
Attn:
Rick Labuda
320 Osprey
Ct.
Wexford, PA
15090
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