US House To Focus On Chiari Research

!!!Breaking News from Conquer Chiari!!!
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., 2008.
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


About AZSyringoChiari

Support Group for rare neurological disorders.
This entry was posted in 2009. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s