Since 2004, Conquer Chiari has made significant progress in our mission,
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 2,000,000 times with over 5,000,000 pages of
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.
In 2008, 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 2011, the walk was held at 47 locations, involved 5,800 people and raised more than $400,000 for research.
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.
In 2010, organized the third Conquer Chiari Research
Conference, which has become the primary scientific meeting for Chiari
researchers to present and discuss research.
To date, Conquer Chiari has funded more than $1,000,000 in research projects. 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.
Created the Conquer Chiari Patient Database; a secure, web based, database application which will collect and store non-identifiable demographic and health related data about Chiari patients, entered primarily by the patients themselves. . In addition to research by Conquer Chiari personnel, the Database will be made available to external researchers. By collecting both a broad and large data set of the characteristics of Chiari patients, it is hoped that the demographics, natural history, and treatment outcomes of Chiari can be researched and understood with more accuracy and detail.
In 2011, the Executive Director of Conquer Chiari served as a Guest Editor for a special issue of the journal, Neurological Research, focused on what is currently known and not known about Chiari.
Published Conquer Chiari: A Patients Guide, a
unique book which provides a comprehensive, science based overview of
Chiari written in an easy to understand format, from the patients point
of view, now available for Kindle .