Vote 4 Hope

More than 350 years ago in London, Dr. William Harvey, a man whose life was distinguished by the discovery of the circulatory system, wrote:
Nature is nowhere accustomed more openly to display her secret mysteries than in cases where she shows traces of her workings apart from the beaten path; nor is there any better way to advance the proper practice of medicine than to give our minds to the discovery of the usual law of nature by the careful investigation of cases of rarer forms of disease. For it has been found in almost all things, that what they contain of useful or of applicable nature, is hardly perceived unless we are deprived of them, or they become deranged in some way.  
Harvey's words, from 1657, appear in the paper The Key to the Closet is the Key to the Kingdom: A Common Lesson of Rare Diseases by Frederick S. Kaplan, M.D. July 2006

The Children’s Rare Disease Network has entered the Pepsi Refresh Project for a chance to win $250,000, money that could support the continued development of the Global Genes Project.  The project aims to generate increased awareness for the rare disease community and to encourage pharmaceutical and biotech companies to get more involved in creating therapies for rare diseases.  If the Pepsi Refresh grant is awarded to the CRDN, initial pursuits will be geared toward rare disorders.  But, breakthroughs could have profound consequences for understanding more common diseases as well.  Someday scientific advances resulting from rare disease studies might be able to help you or someone you love.  Right now your help provides hope for millions of children.  Please vote.
Although it looks like something we could stage on our own kitchen counter, this image is from the Hempel Family.  Twins Addi and Cassi use supplements, medications, pill crushers and syringes in their battle against Neimann Pick Type C, one of 7,000 rare disorders that affect at least 15 million children in the US.

Thank you.
Jenni & Andy

1 comment:

rht said...

I voted for Hope this morning and will do so every day this month -- thanks for the link.