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Since 2004, Conquer Chiari has made significant progress in our mission,
including:
- Creation of the Conquer Chiari website, the single
most comprehensive source of information available on Chiari and related
topics. The site contains hundreds of articles, expert interview,
personal stories, patient handouts, videos and more. Overall, the site
has been visited more than 1,000,000 times and more than 7,000,000 pages
of information have been viewed.
- Creation of a social networking site for the Chiari
community with more than 3,000 registered users.
- In 2007, organized a Research Symposium which was
attended by more than 40 top neurosurgeons, radiologists, engineers, and
other professionals. The proceedings were captured in a unique video web
archive and made freely available to the public.
- In 2008, Conquer Chiari was invited by the National
Institute of Neurological Disorders and Stroke (NINDS) to organize an even
larger Research Conference with the goal of establishing the current state
of knowledge and developing research recommendations. The conference was
again well attended by the top neurosurgeons and researchers in the world.
- Though 2010, Conquer Chiari will have awarded more
than $500,000 in research grants. Current research projects include
developing novel imaging techniques to provide an objective diagnosis of
Chiari, identifying which genes are active during a critical stage of
development when it is thought that the Chiari Malformation occurs, and
assessing the cognitive effects of Chiari.
- Published “Conquer Chiari: A Patient’s Guide”, a
unique book which provides a comprehensive, science based overview of
Chiari written in an easy to understand format, from the patient’s point
of view.
- In 2009, launched a separate website,
www.conquerpediatricchiari.org, to focus on children affected by
Chiari.
- Launched the Conquer Chiari Walk Across America.
This annual fundraising and awareness event is a series of walks held
across the country on the same day. In 2009, the walk was held at 31
sites, and involved more than 3,000 people.
- In 2009, a lobbying effort succeeded in getting the
US Congress to include language in the National Institutes of Health
Appropriations Bill directing them to focus on Chiari research.
Stay tuned, because we're just getting started!
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