July 27, 2009 --
We are excited to announce that Conquer Chiari has achieved a major
milestone in our fight against Chiari.
Specifically, through a lobbying effort, we were successful in getting the
US House of Representatives to focus on Chiari research in the recently
approved Labor, Health, and Education Appropriations bill (H3293). The
language, which appears in the House Report accompanying the bill (HR
111-220), directs the NIH as follows:
"Chiari - The Committee recognizes that a research conference titled
''Chiari Malformation: State of the Research and New Directions'' was
convened in November 2008 to identify the current state of knowledge and to
identify key areas of research. The Committee encourages aggressive measures
toward implementing these recommendations, including but not limited to:
using advanced engineering and imaging analysis to develop an objective
diagnostic test for symptomatic Chiari, understanding the genetic basis of
Chiari, and increasing focus on pediatric patients including symptoms,
optimal treatments, and quality of life issues. The Committee requests NINDS
to submit a report to the Committees on Appropriations of the House of
Representatives and the Senate by April 30, 2010 detailing its progress."
The legislative language is an extension of the work Conquer Chiari did in
organizing and getting NIH funding for the research conference held in Nov.,
We believe that if passed by the Senate and turned into law, this will
translate into significant funding of Chiari research by the NIH. Although
there are no guarantees, we are hopeful, and working towards, the Senate
adopting the same language.
The Chiari community owes a debt of gratitude to Rep. Granger, Rep, Lowey,
and their staffs for making this happen. If you live in their districts (NY
and Texas), please consider sending an email of thanks to their offices.
You can see the actual House Report 111-220 here:
The Chiari language is on Page 120.
Rick Labuda, Executive Director