July 31st, 2009 --

Over the past year, Conquer Chiari has brought increased attention and resources to the issue of pediatric Chiari. Our efforts kicked off with the 1st Annual Pediatric Gala last year which raised $70,000.

With this money, we were able to fund Dr. Simon Gregory, of Duke University, to research the genetic expression of Chiari sub-groups in pediatric patients. In addition, Dr. David Frim, of the University of Chicago, was funded to look at the cognitive impact of Chiari on children.

In addition, pediatric Chiari was a focus area of our professional research conference last November.
Finally, as you can read about on the front page of this publication, we have been successful in getting the US House of Representatives to direct the National Institute of Neurological Disorders & Stroke to focus on Chiari, and pediatric issues in particular.

However, we are not resting on our laurels. Planning has been under way for the 2nd Annual Pediatric Gala, to be held Sept 25th and we have launched major new program to help families affected by pediatric Chiari.

Specifically, building on the success of our acclaimed Conquer Chiari website, we have launched a new website dedicated to pediatric issues:

www.conquerpediatricchiari.org

Although it is not yet complete, it is certainly far enough along for people to get a feel for what it will be like.

The intent is to not only provide easy to understand information, but to make families feel less alone as they face the Chiari challenge.

To that end, we have added some new features, such as Faces of Chiari which highlight the human impact of the disease.

I encourage you to take a moment to check out the new site and let us know what you think. If you have ideas for content or features, please don’t hesitate.

In the meantime we will keep pushing on both fronts (adult and pediatric) in our fight against Chiari.

-- Rick Labuda
 

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