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C&S Patient Education Foundation Bolsters its Acclaimed
Web-based Resource to Better Support those Affected
Pittsburgh, PA – June 8, 2005 - The C&S Patient Education Foundation, a
501(c)(3) non-profit dedicated to improving the experiences and outcomes of
Chiari and syringomyelia patients, today announced a new initiative, “Conquer
Chiari”. The “Conquer Chiari” campaign is a comprehensive, multi-faceted
strategy involving patient education, awareness, and research targeted at
dramatically improving the quality of life for Chiari patients.
“Chiari is a complex disorder,” stated Rick Labuda, Executive Director of the
C&S Patient Education Foundation, “and as such, it necessitates a complex
solution. No single action will beat it, but the combined efforts of many
people, deploying many techniques across many fronts, certainly can. ‘Conquer
Chiari’ captures the essence of what we hope to accomplish. For far too long
Chiari, which affects upwards of 300,000 people in the US, has destroyed
people's lives. It’s time to fight back and to do so effectively.”
The first step in the “Conquer Chiari” campaign is the renaming and expansion of
the Foundation’s website to
www.conquerchiari.org. According to Labuda, a Chiari patient himself,
“Patient Education is critical and we believe the Conquer Chiari website is the
most comprehensive source of information available about Chiari, syringomyelia,
and related topics. In addition to extensive background information, such as an
FAQ and Patient Education Sheets, the archives of our monthly newsletter contain
over 200 articles, including research updates, interviews, and personal stories.
In expanding the site, we have organized this wealth of information such that it
is easy for anyone, from patients to medical professionals, to get the answers
they are looking for quickly and easily.”
“This is just the first step,” the Executive Director continued. “In our battle
against Chiari we will continue to expand the website, enabling patients to make
informed, intelligent decisions; we will raise awareness among both the general
public and the medical community; and we will pursue an aggressive research
agenda to beat Chiari once and for all.”
About C&S Patient Education Foundation
C&S Patient Education Foundation is a 501(c)(3) non-profit serving the Chiari
community. Its “Conquer Chiari” web site provides patients, family members, and
medical professionals with accurate, up-to-date information in an
easy-to-understand format. The website (www.conquerchiari.org)
averages over 130,000 visits per year and nearly 2 million pages of information
have been viewed since its inception.
About Chiari
Chiari (a brain malformation) is a serious neurological condition which affects
more than 300,000 people in the United States. Symptoms include severe headaches
and neck pain, loss of sensation and weakness in arms and legs, balance
problems, visual disturbances, and trouble swallowing. Approximately 30%-50% of
people with Chiari also develop syringomyelia (a fluid-filled cyst in the spinal
cord), which if left untreated can result in permanent nerve damage and
paralysis.
Contact: Rick Labuda
Phone: 724-940-0116
Email: director@conquerchiari.org
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