The reason? Barranquitas has the world’s highest concentration of people suffering from Huntington’s Disease – also known as Mal de San Vito.
Huntington’s is a fatal genetic disorder that affects the body’s ability to control its muscles. Because of its relative isolation, the gene that causes Huntington’s has been transmitted through generations in Barranquitas, and the high incidence of the disease has made the town uniquely valuable to researchers.
I’m not a specialist, and I can’t do this story proper justice. So instead of rambling and getting a thousand things wrong, I simply invite you to read the BBC article discussing Dr. Wexler’s work. One of her many accomplishments includes isolating the gene causing Huntington’s, thanks to careful genetic tracing of a particular Barranquitas family.
I will then point you to the video from the BBC that accompanied the story. Since the BBC is so stingy with its media, you can download it here.
Another good read is Benedict Mander’s excellent article for the Financial Times. The money quote:
"Although companies such as Shell and GlaxoSmith-Kline have shown support, if so far limited, for the project, perhaps the biggest barrier to progress is posed by the Venezuelan government. Permission is required to take blood samples out of the country to continue research, which is essential since no laboratory in Venezuela has the technology to do so."
But don’t stop there.
After reading all this and watching the video, if your heart is at all moved, go to the website of Dr. Wexler’s foundation. There, you will not only learn about Dr. Wexler’s work, but you will also have the chance to help.
And, please, give.
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