ISMRD
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.
Publicity
Dr. Skojec, and all of Alex's family, has done much to advocate for his son, Alex, since learning of his diagnosis. Among these are public awareness efforts utilizing the local and national press. Among these accomplishments are the following stories, which will provide further information about Alex and his struggle against Sialidosis:
- Family fights against rare genetic disorder: Press & Sun Bulletin, August 13, 2000
- Parents on hunt to save son's life: Times-Herald Record, May 10, 2000
- No cure for boy's disease, but will to survive strong: Poughkeepsie Journal
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