The 2012 International Conference for Glycoprotein Storage Diseases and the extension of the Natural History Study will take place in Charleston South Carolina July 27th - July 30th 2012.

Background.

Jenny home | introduction | background | journal entries | photo album | write me!

Jenny Smith's journey began, unbeknownst to her family at the time, many years ago when, according to her mother, Dianne, Jenny experienced a series of seemingly unrelated physical challenges.  Through a succession of specialists the real cause lay hidden, until the fall of 1998, when at the age of 22, Jenny's true diagnosis, alpha mannosidosis, was found.

What follows within is the ongoing record of Jenny's journey that began with the decision to undergo bone marrow transplantation, a very rare procedure for her disorder. Through the cooperation and consent of her family we offer "Jenny's Journal" as a hopeful guide for others. Our grateful thanks to the Smiths and, especially, to Jenny whose courage inspires us.

ISMRD penguin logo. Last updated: January 4, 2000

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