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Extraordinary Measures Movie Is A National Healthcare Wake Up Call

January 13, 2010 by  
Filed under Featured Stories

Extraordinary Measures, a new movie centered on the efforts of John and Aileen Crowley to find a researcher who might help find a cure for their two children’s rare genetic disease (Pompe Disease), will hit theaters on January 22. I can’t wait to see this movie!  The trailer sounds eerily familiar as we are working around the clock to find our own miracle for Addi and Cassi and kids suffering from Niemann Pick Type C disease (a rare and fatal cholesterol disease that is often referred to as the “Childhood Alzheimer’s.”)

I hope this movie is a wake up call to the NIH, FDA, Congress and other government agencies — people must understand what is happening to families facing fatal Rare Diseases. Like the Crowley’s, we are not going to sit around and wait for our kids to die.  But everyday it is a battle with hurdle after hurdle to cross to make the slightest progress.

Thanks to The Crowley’s for being an inspiration to all families fighting Rare Diseases and for CBS Films for making what looks like an amazing movie.  The website they created for the film has an “inspiration quilt” which allows you to upload your personal story.  I uploaded the Addi and Cassi story about our efforts to create a “Virtual BioTech” — please vote for us as we could use the money for cyclodextrin research!   (Vote now and help The Addi and Cassi Virtual Biotech win $10,000).

Please support the goals of, an effort being organized by the Kakkis Everyday Life Foundation.  Our healthcare system needs a miracle too.

Also, join the Global Genes Project and download your denim jeans ribbon — the new symbol for Rare Diseases!


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